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Published by chanpreet, 2019-07-23 08:45:44

N&V June 2019



summer 2019 Number 118

October is Lupus Awareness Month!

Grand Draw results 2019

Maintaining employment in SLE - Online survey updates

SLE - Increased cardiovascular risks

Education and Living with Lupus

10 lessons, 10 years with Lupus

Cheryl Marcus - A Personal View

The National Magazine of
@lupus_UK @LupusUK
ISSN 1746-9910 Registered Charity Nos. 1051610 SC039682

FOuNDer HON. lIFe PresIDeNT NATIONAl OFFICe AND sTAFF (*part time)
Cheryl Marcus Professor Graham Hughes MD FRCP St James House, Eastern Road, Romford, Essex RMl 3NH
HON. lIFe vICe-PresIDeNT Tel: 01708 731251
Yvonne Norton, MBE
PATrONs CEO Chris Maker
Professor Sir Peter Lachmann FRS Janet Dean Deputy CEO Paul Howard
Gwyneth Strong Paul Moriarty Fundraising Manager Janine Hirsch
Lesley Collier CBE Frances Curran
Publications Editor Christine Watkins*
TrusTees FOr 2018 Appointed to May Administration Mary Phillips*
Chair/Trustee Kevin Weston North Wales 2019 Appeals/Social Media Officer Chanpreet Walia*
Vice Chair/Trustee Yvonne Norton MBE West Midlands 2021
Secretary/Trustee David Hopkins Devon & Cornwall 2020 Membership and Information Officer John Braybook*
Treasurer/Trustee Elaine Holland North West 2021 THe luPus uK meDICAl & sCIeNTIFIC Peer revIew PANel
Trustee Jan Roberts North London 2021
Trustee Karen Newby North Wales 2020 In order to ensure that all Grant Applications made to LUPUS UK are
Trustee Janet McComiskey Strathclyde 2019 expertly assessed, the charity has a Peer Review Panel. The Panel,
Trustee Liz Mellon Essex 2021 currently chaired by Prof David Isenberg, meets twice each year and
Trustee Sammy Ainsworth North West 2020 makes recommendations as to funding of Applications to the Trustees.
Trustee Kim Opszala Thames Valley 2019 Separately to the Peer Review Panel, a number of leading
Trustee Jamie Loden Suffolk 2022
lupus/rheumatology consultants have been appointed as Medical
NATIONAl COuNCIl Advisors to LUPUS UK. The Peer Review Panel and Medical Advisors
National Council meets in February and October and is comprised of cover a wide range of experience in lupus and allied conditions.
the Officers/Trustees above together with the Chairpersons of Regional
Groups or their representatives and Regional Co-ordinators. Cover photo: Flass vale Tractor Club - see page 45.

LUPUS UK Regional Groups

CHAIrs PATrONs NOrTH wAles Prof. Peter maddison
CAmbrIDGesHIre Karen Newby (Newborough) 01248 440108
Davina Frost (Hardwick) 01954 211679 NOrTH wesT
DevON & COrNwAll lord Hoyle of warrington Alison raynsford Elaine Holland (Stockport) 0161 474 7024
David Hopkins (Torquay) 01803 203318 Dr David Hutchinson PembrOKesHIre
Dr Christopher Gardner-Thorpe
DOrseT Christine & Christopher Chope Obe mP Wendy Diment (Tenby) 07920 052514
Sean McFetrich (Bournemouth) Dr. Neil Hopkinson Dm FrCP sOuTH & eAsT sCOTlAND
07815 58148 (Regional Co-ordinator)
Elaine Stewart (St Andrews) 07803 603228 (Regional Co-ordinator)
eAsT mIDlANDs sOuTH lONDON Laura Sinnett (London) 07533 308268 (Regional Co-ordinator)
Gill Woodford (Nottingham) 01159 374168
sOuTH wAles
HAmPsHIre Dr. Neil buchanan
Refer to National Office
Refer to National Office
HerTs & beDs
Refer to National Office sTrATHClYDe
Janet McComiskey (Ayr) 01292 319922
KeNT THAmes vAlleY
Samantha Murphy (Rochester) 01634 315375 (Regional Co-ordinator) Dr richard stevens
Sally Baker (High Wycombe) Prof. Paul wordsworth
NOrTH eAsT 01494 450317 (Regional Co-ordinator)
Sally College (Tyne and Wear) 07983 408145 (Regional Co-ordinator) wesTerN

NOrTH lONDON Joan ryan mP Refer to National Office
Refer to National Office
wesT mIDlANDs
NOrTHerN IrelAND Dr Aubrey bell Coral Chapman
Margaret Hughes (Co. Antrim) 02890 859381 Yvonne Norton MBE (Coseley) 01902 498236 eva Fontaine

rePOrTs From the Editorial Desk…
Editorial Desk 1
View from the Chair - Kevin Weston 2 we have come a long way since 1979 when the first
From the Secretary - David Hopkins 2 lupus Group Newsletter was published by our founder
CEO Report - Chris Maker 3 Cheryl marcus (see below) and this is clearly shown by the
Treasurer’s reports - Elaine Holland 4
number of pages in this bumper edition of your magazine.
Regional Group Reports 40 - 47
On pages 24 to 27 we are fortunate to have the personal
meDICAl mATTers
stories and experiences from some of our younger readers
Maintaining employment in SLE - online survey results 5
Sara Booth that show what can be achieved against adversity. Page 28
Increased Cardiovascular Risk in patients with SLE 6-7 features the second in a series of profiles of our valued lupus
Dr Liz Jury researchers; this time it’s Professor Christian Hedrich.
Hydroxychloroquine Prescriptions 8-9
End of Grant Report - Prof I Giles and Prof A Rahman 10 enclosed with this edition is our new eye-catching lupus
Awareness month poster and a sheet of stickers, which we
FrOm OTHer QuArTers
hope you will use to good effect. Further copies of the poster
can be downloaded via
Education and Life with Lupus - Amy Baker 24-25
Katty’s territory - Katrina Brooks 25 awareness-month/ or requested, with other publicity
10 Lessons from my 10 Years with Lupus - Niamh O’Kane 26-27 materials, using the Publicity leaflet also enclosed; see
LUPUS UK Funded Researcher profile - outside back cover for further information.
Prof. Christian Hedrich 28
let’s make a huge impression this lupus Awareness month
World Lupus Day 30-31
and make lupus visible.
Eclipse News 32-33
A personal View - Cheryl Marcus 34-35
Lupus, the flower, the Dog and the Book - Régine Demuynck 39 40 Years of lupus news!
member INFOrmATION The first ever Lupus Group Newsletter appeared back in
Fundraising Focus 12-22 May 1979; a simple duplicated sheet, sent out to 20 lupus
pen-friends. Until Cheryl Marcus, founder, retired as Editor
Information Page 48 in 2002, she was to make this into the publication we now
LUPUS UK Contacts 49 know as LUPUS UK News & Views, reaching thousands. A
remarkable achievement for Cheryl and LUPUS UK. Look
out for her article on pages 34 and 35, A Personal View.
LUPUS UK News & Views Magazine

Published by: LUPUS UK, St James House, Eastern Road,
Romford, Essex RM1 3NH
Email: [email protected]
Tel: 01708 731251
National Office: Chris Maker, Christine Watkins
Winter ’19 Spring ’20 Summer ’20
Publication: 12 Nov 10 mar 14 July
Articles due: 20 Sept 24 Jan 22 May
Please send your letters, photographs and other articles for
possible publication to us at the above address. LUPUS UK
has to reserve the right to edit or shorten articles and such
decisions on publication must be final.
The articles appearing in ‘luPus uK News & views’ do not
necessarily reflect the opinions of LUPUS UK, its officers or
members. Articles taken from local group newsletters are
printed in LUPUS UK News & Views with the consent of the
author. Advertisements for products or services are not
endorsed by LUPUS UK and persons diagnosed with lupus or Do you remember the first edition you received?
suspecting the illness should always consult with their own The magazine continues to grow and we are grateful to
physician to ensure proper evaluation and treatment. our members for their continuing contributions.


View from the Chair

Summer is areas. The lifestyles can be good but they members for their much appreciated
progressing need to be provided with strong links to support.
well with major hospitals and universities so that they A warm welcome to our new Trustee,
comparisons are part of a multi discipline health team. Jamie Loden, who attended his first
to 1976 and meeting in Exeter.
1983. Enjoy; In March along with the Pembrokeshire
with the hats and sunscreen! Group, I met with the Deputy Chief Medical Our next Information Day will be held in
Officer for Wales to discuss these rural London on the 5th October 2019.
It’s very noticeable on HealthUnlocked to issues in the Principality.
read about the varying standards and The sun was shining in Exeter for our AGM If there isn’t a LUPUS UK nurse in your
availability of consultants around the UK. and Information Day. Many thanks to the region why not ask your consultant to
The British Rheumatology Society Devon and Cornwall Group and our team apply? We now aim to appoint three
recommendation is one consultant per in Romford for organising a wonderful day. nurses every two years!
86,000 of population. For those living in It was good to meet with members from If you need assistance; the Romford team,
our urban areas this is achieved; in fact many parts of the UK and the videos are our Regional Groups, our Contacts and
within the M25 it is one consultant per now available on our website. At the AGM, HealthUnlocked are all there waiting. If you
50,000 of population. In the rural regions my three years as your Chair came to a want to share a problem or a smile, try
there is only one consultant per 120,000 close. I have been elected for a further HealthUnlocked it’s a magical forum.
per population. We need to find ways to three years. Thank you to my fellow Best wishes Kevin Weston
encourage doctors to work and live in these Trustees, the Romford team and our

From the Secretary’s Desk

In recent months are increasing and that increase is likely to member Janet McComiskey; we don’t yet
the Board has used escalate, coupled with the need to fund have anyone from Ireland! We know that
its powers to our small but successful charity, it is under Kevin’s leadership, the Trustees will
increase its incumbent on the Trustees to look to how continue to work as a team, pooling
capabilities by bringing in additional we can shape our own future; in other strengths and ensuring that the momentum
members to increase its overall experience words, leading rather than following. already created will be enhanced in the
and strength. It is looking at planning on a future.
long-term basis rather than just annually. In At the AGM in May we re-elected Chair David Hopkins
Kevin Weston (North Wales) and Scottish
a world where the calls on what we offer

List of Winners of the 2019 Grand Draw 

held on Tuesday 25th June 2019

1st PrIZe - £1,500 4th PrIZe - £250
ticket no. 00264 ticket no. 01747
mrs m. Dagger, warwickshire mr J. walby, Abertillery

2nd PrIZe - £750 5th PrIZe - £100
ticket no. 16082 ticket no. 14127
ms N. marwood, Cumbria mr m. williams, wrexham
The draw took place at National Office.
3rd PrIZe - £500 Pictured with Janine Hirsch is mike
ticket no. 14866 Knights, Payroll manager, rCIb,
mrs K. slaughter, Cumbria st. James House, who kindly drew the
winning tickets.

We are so grateful to all those who purchased tickets and supported LUPUS UK through the 2019 Grand Draw


Chief Executive Officer’s Report

CEO’s Report to the LUPUS UK AGM 18th May 2019

We continue to have reduced our print runs accordingly. online to take part in numerous events and
make great Last year there were 474,326 unique visits we are extremely grateful to them for
strides in to an increase of their tremendous efforts, covering: Go That
reaching out over 21%. LUPUS UK News & Views is Extra Mile, the London Marathon, Great
and raising currently posted to members but an online North Run, numerous other runs and walks,
lupus awareness. In particular via modern version is in the pipeline for those who wish Lunch 4 Lupus, coffee mornings a wing
technologies – on the internet with social to receive it this way. walk and much more.
media. However, there continues to be a Keeping people who have lupus in touch is A special mention of the Wooler Walkers
place for print media and we continue to a high priority and we have continued to from the North East who each year walk
publish LUPUS UK News & Views, along see growth in numbers using our various the Cheviot Hills and have over the years
with our leaflets, booklets and other sites, as at 31 December 2018: Facebook raised a substantial sum of money.
information in paper form. It is important 30,966, Twitter 8,562 and HealthUnlocked
that we do this so that our information and 22,470. Our latest ‘recruit’ Instagram has So, a huge thank you to all our wonderful
news is available to all, as not everyone 3,430 (treble the number for the previous supporters who have taken part in the
has access to the internet and many year). Peer support is so important and many events and challenges mentioned
people prefer to have their reading social media makes it much easier to above and to those who have supported
matter in a tangible form. LUPUS UK by making a donation or giving
contact others.
However, we increasingly see that people their time.
obtain most of their information electron- Numerous hospital stands have been A big thank you to everyone who has
ically via personal computers, tablets and arranged up and down the land for both volunteered for LUPUS UK, with special
other mobile devices. Indeed, when the Lupus Awareness Month and World Lupus thanks to those who run our Regional
LUPUS UK website was last upgraded it Day. There is always a great appetite for Groups, our telephone Contacts and to the
was to make the site compatible and lupus information, not only from those who Trustees, the legal and financial guardians
accessible through mobile devices. have lupus, their family and friends but of your charity and finally my colleagues
We know that a great deal of lupus also members of the medical profession. at National Office for their dedication
information is obtained this way and have The internet also assists greatly in and team spirit.
seen an ongoing reduction in the amount of fundraising and during the past year many Chris Maker
paper literature that is requested and so supporters and members have signed up


Prof S Sutton, Prof C Gordon & M The LISTEN study (Listening: Involving SLE £24,683 Agreed
Sloan, University of Cambridge patients To Empower and Negotiate recognition over 10 months

Dr B Parker, Prof I Bruce, Prof R Elliott Stratifying cognitive dysfunction in systemic £24,865 Agreed
& Dr M Barraclough, University of lupus erythematosus and its associated factors: over 12 months
Manchester A pilot study.

Dr A Alase, Dr E Vital, Dr M Wittman Plucked hair follicles as a diagnostic tool in £25,000 Agreed
& Dr Md Yusof, Chapel Allerton SLE alopecia over 12 months
Hospital, Leeds
Prof M Ehrenstein, UCL, London Characterising T and B cell phenotype and £23,644 Agreed
function after combination rituximab and over 6 months
Dr S Sacre, Brighton & Sussex MicroRNA regulation of cytokine production in £13,000 Agreed in principle
Medical School systemic lupus erythematosus over 12 months subject to funding

Dr E Rosser, UCL, UCLH, GOSH, Is the metabolic profile of lymphocytes £6,254 Agreed in principle
London altered at puberty and does this contribute to over 6 months subject to funding
the onset of Juvenile Systemic Lupus
Erythematosus? A preliminary study.

Dr K Shah, Dr V Reddy, Dr C Ciurtin Does a Doctors Unmet Educational Need £25,000 Declined
& Dr M Leandro, UCL, London Contribute to patients’ poor medication over 24 months
adherence in Systemic Lupus Erythematosus?

Dr M Mutch & Dr P Ames, Nitrated fibrinogen in Systemic Lupus £24,926 Declined
University of Aberdeen Erythematosus: A possible explanation for over 12 months
increased thrombosis.


Treasurer’s Report

Management Accounts to 31st May 2019

The Management Accounts, for the period ending 31st May 2019, shows a deficit of
£17,154.48 against budget.

INCOme - For this period, our income at GrANTs - Our grant commitments so far OvervIew - The budget for this year
£345,856.40 is over the budget of this year is over budget at £179,461.88 anticipates an income of £838,000 and an
£285,400 by £60,456.40. There are by £79,461.68 and our grant commitment expenditure of £457,000 (excluding
minor shortfalls in Membership at the 31st May taking us through to 2023 Grants) therefore giving us an expected
Subscriptions and Group Remittances and is £1,744,332. surplus of £381,000. The Grants budget is
the National Draw is unlikely to meet its INvesTmeNTs - At the 14th June, our £300,000 and any surplus funds may also
budget for this year. external investments stood at £758,168. be used for this purpose, helping to fulfil
one of our main objectives. Money
eXPeNDITure - For the same period, our We currently have reserves of continues to come in and with the tight
expenditure at £180,594 is within budget. £2,019,649.66 which covers our grant controls we keep on expenditure, I am
There is a deficit in National Office, Resale commitments to date and twelve months confident that we will maintain our
Items, Travel and Sundries. Overall, we running costs of National Office. current position.
are within budget by £1,851. Elaine Holland - Treasurer/Trustee


buDGeT CumulATIve buDGeT Over/uNDer
INCOme £ £ £ £
Member Subscriptions 53,000.00 10,877.00 11,000.00 -123.00
Group Remittances 55,000.00 10,120.00 11,000.00 -880.00
General Donations 163,000.00 93,754.35 67,500.00 26,254.35
Appeals Office 325,000.00 145,698.05 133,750.00 11,948.05
Appeals Office (Admin) 215,000.00 75,556.03 51,550.00 24,006.03
National Draw 8,000.00 5,315.00 6,500.00 -1,185.00
Sales 15,000.00 2,738.96 2,500.00 238.96
Interest & Dividends 4,000.00 1,797.01 1,600.00 197.01
Sundries 0.00 0.00 0.00 0.00
TOTAl INCOme 838,000.00 345,856.40 285,400.00 60,456.40
National Meetings 25,000.00 9,936.46 12,200.00 2,263.54
National Office 81,000.00 38,367.35 35,926.00 -2,441.35
Resale Items 8,000.00 2,175.06 1,000.00 -1,175.06
Publicity 21,000.00 3,529.74 3,600.00 70.26
National Publications 52,000.00 17,855.79 21,000.00 3,144.21
Special Projects 54,000.00 17,931.24 18,900.00 968.76
Travel 4,000.00 2,098.28 1,619.00 -479.28
Salaries 205,000.00 81,993.01 84,200.00 2,206.99
Sundries 7,000.00 6,707.07 4,000.00 -2,707.07

eXPeNDITure 457,000.00 180,594.00 182,445.00 1,851.00
surPlus/(DeFICIT) 381,000.00 165,262.40 102,955.00 62,307.40
Grants Expenditure -300,000.00 -179,461.88 -100,000.00 -79,461.88

TOTAl surPlus/DeFICIT 81,000.00 -14,199.48 2,955.00 -17,154.48


Fluctuation, invisibility, fatigue - the barriers to maintaining

employment in SLE: results from an online survey

sara booth, elizabeth Price, elizabeth walker.

I’m really pleased to tell everyone that this research is now published in the Lupus journal in
December 2018. This journal is read by most physicians who treat SLE.

Thank you to everyone in the group who than simple tiredness - is a feeling that is demoralising it was to have an illness that
took part in the survey. We had a not understood by many co-workers - or was so little understood and therefore for
wonderful response in a very short time even family, and again contributes to which there was relatively little support. I
from people all over the UK. The extra people losing their jobs or feeling honour- have also presented it at the University of
information that participants (i.e. those who bound to stop working. As lupus is invisible, Cambridge to a mixed audience of people
took part in the survey) gave us as what is and indeed it is clear that many people from different professions and jobs in the
called ‘free text’ (writing down exactly look healthy even when they feel very clinical school. It obviously struck a chord
what they wanted to say) was very unwell, many colleagues seem to imply that with a number of people - some of whom
detailed and very heartfelt. It was very the individual with lupus must be ‘putting it spoke at the meeting - relating their
moving to read. These subjects - on’ perhaps to get out of difficult work. experiences - and some talked to the
employment and benefits - are obviously Sometimes this feeling that others do not organiser afterwards - understandably
very important to people with lupus. We believe them may simply be a feeling that finding it too difficult to say something in
wrote one paper on working with lupus comes from the person with lupus public. I was particularly pleased that some
(title at the top of this article, on which I themselves - it was clear that lupus has a members of the human resources/personnel
took the lead), and one on benefits which I detrimental effect on people’s confidence departments were there and said it helped
will not discuss here. and self-belief. It is self-evident that them to understand more about fluctuating
The essence of the paper on employment is someone attending work irregularly can illness. I have presented the work as
in the title - the fact that lupus fluctuates make getting some types of work done to posters at a lupus meeting in San Francisco.
unpredictably makes working life difficult. a high standard difficult. The best outcomes I’ll report back - like all people with lupus
Many colleagues/managers could not were when people could work flexibly or I’m quite reluctant to plan too far ahead or
understand how even do a very little work and receive rely on managing to keep to all my plans.
some benefits. Another paper on the difficulties that
It is very clear that appropriate people with lupus have with claiming
employment is good for individual’s health benefits has been submitted (with input
and that many people who have to leave from all of us) to a social science journal.
work end up - as one person said - living Elizabeth Walker (of Hull University) is first
lives of ‘poverty and isolation.’ Others were author (i.e. took responsibility for writing)
very worried or felt very guilty, about on this paper - it may be some months
relying on their partner’s or parents’ before we hear about that one. Apparently
income and very frightened about what social science journals take a very long
would happen in the future. Others had time before they let you know if they are
had to leave work even when they had going to publish your paper.
understanding employers, and felt the loss The paper is published as ‘open access’
keenly. Do read the paper to hear what that means it can be shared freely without
others with lupus are saying about trying to asking for permission from the copyright
stay in work whilst living with lupus. holder. Do pass it round to any you know
I have also talked about the research at with lupus or perhaps someone with
various meetings. In February I presented it another fluctuating illness.
to the Trustees and members of the
National Council of LUPUS UK. The council 7/0961203318808593
is made up of members from across the I do hope we will be able to more research
country (Lara and I went to represent the in the future and we are actively looking
someone could be Cambridge group). When I had finished for sources of funding but this may take
well one day and feel very unwell the next talking someone said that I had presented some time.
and be unable to work. Fatigue - which as ‘the story of my life.’ There were lots of
people said is so much more debilitating questions and many people who said how Sara Booth

easysearch is completely Free and, by making
just 10 searches a day, you could raise
around £20.00 a year for luPus uK.


Increased Cardiovascular Risk in patients with SLE

reseArCH PrOJeCT uPDATes each patients disease symptoms and can be detected by ultrasound scans.
Lupus is a very difficult disease to treatment with information gained from Professor Rahman recruited 100 adult
diagnose and to treat and despite a large examining the different types of immune patients with lupus who did not have any
research effort there are still many things cells in the blood as well as investigating previous symptoms of cardiovascular
we do not understand about the disease. different types of fat (or lipids) in the disease and did not have any of the
normal risk factors that are associated with
For example we do not know why the blood. heart disease such as increased levels of
symptoms of lupus are so varied and why The first project, ‘Increased cardiovascular bad fats in the blood. These patients were
some people with lupus respond well to risk in patients with SLE: what is the role of scanned for the presence of thickened
treatment and some do not. Over the last invariant Natural Killer T cells?’, was arteries; 36 patients out of 100 had early
five years LUPUS UK has funded two major performed by Edward Smith in close signs of developing heart disease.
research projects within the Jury Group at collaboration with Professors Rahman and
the Centre for Rheumatology/Centre for Isenberg who were investigating increased We wanted to investigate the blood of
Adolescent Rheumatology Versus Arthritis at risk of heart disease in a group of 100 these 100 patients to find out whether
University College London. Both projects adult patients with lupus. there were any changes in the immune cells
were focused on investigating why people Patients with lupus have a much increased or in the fats in the blood between patients
with lupus have an increased risk of heart risk of suffering from cardiovascular with and without thickened artery walls. In
disease. These grants part-funded two PhD disease (such as a heart attack or stroke) particular we were interested in a
studentships for two promising young compared to people that do not have lupus specialised type of immune cell called iNKT
scientists, Edward Smith and George who are the same age and sex. However, it cells that are able to recognise changes in
Robinson who both graduated with is very hard to predict which patients are fat levels in the blood. We thought that
excellent PhDs and now continue to work in at more risk because this is not associated iNKT cells could play a key role in linking
research. During both projects we worked with the traditional risk factors normally immune cell defects, blood fats and heart
very closely with the doctors who look after associated with heart disease including disease in lupus patients. To investigate this
lupus patients in hospital in particular, changes in blood fats measured by the we took blood from these patients
Professor David Isenberg, Professor Anisur routine hospital laboratories. An early sign performed a very detailed study of their
Rahman, Dr John Ioannou and Dr Coziana of heart disease is increased thickness immune cells and a comprehensive analysis
Ciurtin. In this way we have been able to (atherosclerosis) of important blood vessels of over 200 different types of blood fat
match very detailed information about (arteries). Such changes in blood vessels (not normally measured in routine practice).

L-R Kirsty Waddington, Liz Jury, Ines Pineda-Torra,
Elvira Chocano Navarro and George Robinson
involved in the studies

We found that patients with thickened cancer are over-active and actually cause that change the fats in the body.
arteries had changes in the types of fat in disease. From our previous research we Following on from this discovery, we
their blood and increased numbers of iNKT know that an important factor that controls thought that diet could be an important
cells compared to patients with normal immune cell behaviour is the amount of fat therapeutic option for patients in order to
arteries. Our results suggested that very they have on their surface (the cell control their risk of heart disease. We
detailed analysis of blood fats and iNKT membrane). We also know that the therefore asked 300 patients about their
cells could be used to predict the early pathways controlling how much fat is opinions on diet using an online survey
signs of heart disease in lupus patients. This produced by immune cells are disrupted in promoted through social media. This data is
work has been published in scientific people with lupus. In this project we wanted now published in Lupus (Robinson et al
journals (Smith et al, Science Immunology, to find out whether the defects identified in 2019) and the results highlighted a huge
2016) and presented at scientific meetings adult patients were also seen in patients gap in dietary education for patients.
as talks (5 national/international meetings) with JSLE. Patients feel it is important to know how
and as posters (4 national/international In the last 3 to 4 years we have been diet can help their disease symptoms
investigating a group of 65 young patients however few patients receive clinical
We are now continuing this work in a with JSLE compared to age and sex counselling regarding diet.
number of ways: we are working to try to matched teenage healthy controls. We
identify a blood fat profile (unique to lupus have performed a very thorough investi- We now want to identify potential drugs or
patients) that can be used in the clinic to gation of over 44 different types of dietary/life-style interventions for future
predict increased risk of heart disease in immune cells in the blood of patients and clinical studies - tailored for patients
adult patients. This will allow us to identify controls. In particular, because JSLE is often stratified for their cardiovascular disease
patients that need specific advice and diagnosed during puberty, we have been risk that have different fat profiles. We will
treatment in order to reduce their risk of investigating the differences between involve young people with JSLE with the
heart disease. We are also investigating immune cells from males versus females. design of such studies and are already
the causes of altered blood fats and how We have identified several important doing so through collection of food
this can influence defects in the immune differences and are still working to frequency questionnaires in lupus clinics
system in lupus patients. To carry out this pinpoint the relationship between sex and engagement events, including the
work we have obtained grants from other hormones, immune cells defects and fat involvement of professional nutritionists.
charities; including the University College defects in JSLE patients. In particular we Once we can understand the link between
London Hospital Biomedical Research are developing complex ways to analyse fat levels in the blood and different
Centre and from the pharmaceutical the data in order to combine all the disease features we can identify and
company UCB Pharma. We now have a detailed information that we have to propose potential new treatments for JSLE
research assistant and a new PhD student improve our understanding of what goes patients. This includes using drugs that
working on this project. wrong in patients and in the long term help reduce fat levels such as statins, dietary
supplements or life-style counselling. We
In the second project, ‘Understanding to improve treatments. plan to use blood fat levels to match
Immunopathogenesis of Juvenile onset SLE: We know that heart disease is also a major patients with the most appropriate therapy.
could targeting lipids control disease serious complication for patients with JSLE We are already discussing ways to set up
progression’ we collaborated with Dr John (more so than in patients with adult onset a clinical study to do this.
Ioannou and Dr Coziana Ciurtin – Principal disease). Therefore we have also Understanding these differences could help
Investigators in the Adolescent Centre for performed a very detailed investigation of develop more appropriate treatment
Rheumatology Versus Arthritis at UCL. over 200 different types of blood fat (as options for JSLE patients, such as using
This project was focused on investigating described above for adult patients). We drugs or diet to change the type of
the immune cells and blood fats in lupus identified that JSLE patients can be divided particular fats that are contributing to
patients diagnosed when they were into three groups: immune cell defects in patients. We have
children or adolescents (juvenile-onset SLE Group 1: High bad fat; presented this work as talks at a number of
or JSLE). In young people the immune Group 2: High good fat and national and international scientific
system is still developing; very little is Group 3: low good and bad fat. meetings, including the British Society for
known about what goes wrong in patients JSLE patients in each group had different Rheumatology, the American College for
that develop JSLE, whether the defects are clinical and immune cell features. In Rheumatology annual meetings and the
the same as seen in adult disease and particular, JSLE patients in Group 1 had forthcoming EULAR 2019 meeting. Further
whether the same treatments are relevant markers associated with increased risk of funding has been obtained from The
for this group of young patients. Rosetrees Trust and LUPUS UK to support
cardiovascular disease (heart disease). Our
In adult patients with SLE we know that results suggest that we can use detailed George Robinson to continue this work.
many of the immune cells involved in blood fat measurements to pinpoint JSLE Dr Liz Jury
protecting the body from infections or patients that would benefit from therapies

is Lupus Awareness Month

Order your Free awareness posters now!


Hydroxychloroquine Prescriptions

This information is intended to explain the difference between brands of hydroxychloroquine
tablets in the UK and what you need to do if you are unable to obtain the one you need.

why was I prescribed have varied presentations of symptoms and adverse effects when they take certain
hydroxychloroquine? react to medications differently. It is brands, most commonly Quinoric®. If you
Hydroxychloroquine is generally the first important to find a version that suits you suspect that your side effects could be
line of treatment for someone who has personally. linked to the brand of hydroxychloroquine
been diagnosed with lupus. It is used for why can i no longer get you take, you may want to consider
skin and joint involvement, muscle inflam- plaquenil®? discussing this with your doctor.
mation, fever, fatigue, pleurisy, to reduce If you have experienced side effects from
the development of renal (kidney) disease Plaquenil® was the original brand of your hydroxychloroquine then you should
and chronic damage, and for its steroid- hydroxychloroquine and was previously the report them using the Yellow Card Scheme.
sparing properties. It is one of the few most commonly supplied by pharmacies in It is important to specify which company’s
licensed drugs for lupus and there is good the UK. In summer 2015 Sanofi-Aventis version of hydroxychloroquine you
evidence for its efficacy and safety. Medicine (the manufacturers of Plaquenil®) experienced the adverse reaction to,
‘de-branded’ the drug to generic. This
When you were prescribed hydroxy- meant that Plaquenil® branded hydroxy- especially if a change of version has
chloroquine your consultant will have chloroquine was no longer available but reversed these effects for you. You can
arranged an eye examination with your the Zentiva generic version is made lodge a report online at
ophthalmologist and this should be identically to the original Plaquenil®.
Any prescriptions that stated ‘hydroxy-
chloroquine sulphate 200mg (Plaquenil)’ or If you previously received Plaquenil® and
‘hydroxychloroquine sulphate 200mg’ can know that you can tolerate it, the generic
be supplied by whichever version the with the same formulation is Zentiva. Other
pharmacist has available as Plaquenil® is alternatives that you could try are
no longer available by that name. Blackrock or Teva as they have different
fillers to Quinoric® or generic Bristol
we’ve heard some people react hydroxychloroquine tablets. Please always
badly to Quinoric®? bear in mind that people with lupus
There is evidence indicating that that many respond to drugs differently – these brands
may not necessarily be more suitable for
repeated annually after five years of experiences of adverse effects are related any given individual.
consecutive treatment. This screening is to to the Quinoric® branded hydroxy-
mitigate a very low risk of retinopathy. chloroquine tablets which was published in what if my pharmacist cannot
The Journal of Rheumatology - obtain my preferred brand of
which brand/version is best? The hydroxychloroquine?
most frequently reported adverse effect
Hydroxychloroquine is the name of the from Quinoric® is gastrointestinal upset but We have received a lot of reports from
drug but there are a few different versions nausea or general flare symptoms have people with lupus recently that their
available in the UK. Plaquenil® was the also been mentioned by some people. pharmacist has been unable to dispense
original brand or trade name for hydroxy- either the Zentiva or Blackrock versions. In
chloroquine that was patented. The only It should be noted that this is not the many cases it has been suggested that this
other branded product is Quinoric® experience of all lupus patients taking this is the result of manufacturing or supply
(produced by Bristol Laboratories). Generic particular brand of hydroxychloroquine. If problems. There are currently no
versions are non-branded products you take the Quinoric® brand and manufacturing or supply issues for these
(produced off patent and cheaper than the experience no adverse effects then there is versions in the UK. We will publish
originals) that have been produced by a no reason to request a change to another additional advice if/when a manufacturing
variety of companies since the patents for brand. or supply issue occurs.
these two brand expired. Every version You can provide the information below to
(with a brand name or generic version) will what should I do if I experience your pharmacist to help them obtain the
include the same quantity of the active side effects from taking hydroxy- version of hydroxychloroquine that you
ingredient hydroxychloroquine, but the chloroquine? need;
formulations differ in terms of the ‘fillers’. It is important to mention any unexpected
The generic versions are sometimes know symptoms or side effects to your doctor or Zentiva
by the company that produces them: pharmacist as soon as possible. Some side
Zentiva (produced by Zentiva), Blackrock effects go away over time as your body If your pharmacist has any difficulty
(produced by Blackrock Pharmaceuticals, gets used to a new drug, so your doctor obtaining generic hydroxychloroquine
Teva (produced by Teva UK Ltd) and Bristol may recommend you stick with your current produced by Zentiva, the product
(a generic version of Quinoric produced by plan for a little longer. In other cases, they description is: "HYDROXYCHLOROQUINE
Bristol Laboratories). advise you to lower your dose or try a SULPHATE (ZENTIVA) 200MG FILM
different drug. COATED" and the 'PIP number' (product
There isn’t a particular brand of hydroxy- code) is 1201730. If for any reason they
chloroquine tablet that will be best for Each brand of hydroxychloroquine cannot find the product on their system they
every individual with lupus. It must be available has a slightly different can ring the customer service line on
remembered that all people with lupus formulation. Some people with lupus report 0800 854 431.

blackrock correct that Quinoric® is the least ically by company name (i.e. ‘hydroxy-
If your pharmacist has any difficulty expensive, but as these are generic chloroquine sulphate 200mg - Zentiva
obtaining Blackrock version of generic medications the difference in cost is minimal version only’) then the pharmacist may
hydroxychloroquine, the product description and the other brands are unlikely to be dispense only the specified brand and is
is: “Hydroxychloroquine Sulphate Tablets outside the range of £0.50 - £1.50 more reimbursed for doing so. This
(Blackrock)”. The product information can expensive per pack and are considerably reimbursement is not at the set price listed
be found at Creo cheaper than having to change to in the Drug Tariff and therefore the
Pharma can be contacted at +44 (0)1371 alternative medications for lupus if pharmacy should not make a loss for
822022 for any further information that Quinoric® is not tolerated or the cost of dispensing the item. Additional information
may be required. Pharmacists can access additional drugs needed to treat the side- about prescribing generic medications is
Blackrock Hydroxychloroquine Sulphate effects and the cost of investigations to available at
200mg direct from Alliance Healthcare by assess the side effects. content/uploads/2017/12/uKmi_QA_
quoting ‘PIP number’ (product code) brand-name_prescribing_update_
116-9523. Typically, if a medicine is prescribed by a Nov2017.pdf
generic name (i.e. ‘hydroxychloroquine
what if my pharmacist refuses to 200mg’) the pharmacist may dispense any Our thanks go to Professor Caroline Gordon
dispense my preferred brand of suitable generic or branded product and and Sr Rebecca Gilman (Lupus Research
hydroxychloroquine on the basis would be reimbursed at a set price by the Clinical Nurse Specialist) for their valuable
of cost? NHS according to the Drug Tariff. contributions to the provision of this
We have been informed by some people Pharmacists would generally aim to dispense information.
that their pharmacy is either unable, or one of the less expensive products available If you continue to experience any issues
refuses to dispense either the Zentiva or so that they receive more profit from this obtaining the hydroxychloroquine tablets
Blackrock versions of hydroxychloroquine tariff and avoid any potential losses that you need, please keep us updated by
on the basis that they are more expensive According to UK Medicines Information emailing [email protected] or calling
than Quinoric®. We understand that it is (UKMi) if a medicine is prescribed specif- 01708 731251.

Make Lupus Visible Campaign for

Lupus Awareness Month 2019

This October for Lupus Awareness Month we LUPUS UK in your posts or send any content you
are encouraging people to MAKE LUPUS would like us to share to [email protected]
VISIBLE! As we know, for many people lupus This year’s Lupus Awareness Month Poster was
presents with few or no visible symptoms designed by Emily Mead, a designer and
making it difficult for other people to illustrator living in Romford. Emily is a graduate
understand the impact it can have. We of Plymouth University after studying BA (Hons)
want to share stories, experiences, photos Illustration and kindly offered to volunteer her
and videos from people affected by skills to our charity as her mum has lupus. We
lupus to help people see it. are extremely grateful for the time and effort
If you are active on social media then that Emily has contributed to this project.
we would encourage you to use the
hashtags #makelupusvisible and You can follow Emily on Instagram:
#lupusAwarenessmonth. Please tag @illustrator_emz

Your Health, Your Choice -

launched in 2007 the official website of the National Health service now has more than 43 million visits per month.
The NHs website is the uK's biggest health website, accounting for a quarter of all health-related web traffic.
Striving to be a world-leading winning, comprehensive health information Social media is an important part of the
multichannel service for everyone service. There are thousands of freely website service, reaching up to 3 million
engaging with the NHS and social care. available articles, videos, tools and apps people a month via Facebook, Twitter and
The NHS website provides an award- to help you make the best choices about video channels such as YouTube.
your health and wellbeing, as well as
making the most of NHS and social care Information on the site is freely available
services in England. to everyone, and content is syndicated to
more than 600 partner websites, including
The service search over 200 NHS organisations, Boots,
search/ helps you find, choose and Mumsnet and Microsoft.
compare health, support and social care
services in England; also publishing reviews The NHS website is funded by the
and ratings across health and social care Department of Health and Social Care
services. Where possible, offering online (DHSC). The content, data and services on
transactional services that should make the website are commissioned by NHS
your interaction with the NHS much simpler. England and delivered by NHS Digital.

End of Grant Report to LUPUS UK

Prof. I.Giles and Prof. A.rahman

How are adverse pregnancy outcomes and Factor (F)Xa reactive
IgG associated with cardiovascular disease (CVD) and endothelial
dysfunction in patients with systemic lupus erythematosus (SLE)?

Patients with systemic lupus erythematosus produced to fight infection. In SLE however, between these sub-groups. Of the MPs
(SLE) have an increased risk of developing an over-activation of the immune system studied only platelet MPs were found to be
heart attacks and strokes, known as cardio- leads to production of autoantibodies that higher in patients with SLE compared to
vascular disease (CVD), and pregnancy target healthy tissue, such as skin or kidneys healthy controls (p=0.025) but these raised
complications, such as miscarriage, and thus cause disease. In SLE, autoanti- levels did not distinguish the presence of
compared to the general population. In the bodies have been identified against plaque. We did not find an association
general population pregnancy compli- various parts of the body including blood between pregnancy complications and
cations and CVD may share common causes clotting factors Factor Xa (FXa) and subclinical CVD but almost half the women
because women with a past-history of thrombin (Thr). In the general population (45%) with SLE had no children, more than
pregnancy complications have an increased FXa and Thr are thought to contribute to double the rate expected in UK women of
risk of developing CVD later on in life. In the thickening of blood vessels, in a process the same mean age. A total of 61% had
SLE however, typical risk factors for CVD, known as atherosclerotic plaque formation, APO (adverse pregnancy outcomes) and
such as smoking and high cholesterol, do which leads to CVD. So we examined rates of miscarriage were higher (31%)
not fully explain its increased risk so we whether autoantibodies against FXa or Thr than in the general population (15-20%). A
examined whether other factors may be are also associated with CVD in SLE. We systematic review of relevant published
important in this project. also tested whether MPs shed by cells that work showed an overall reduction in
We examined whether certain atypical line blood vessels (endothelial cells), or fertility and parity in women with SLE but
factors were associated with the presence circulating blood cells (platelets, involved in could not identify the cause. In our study of
of early CVD that had been detected in clotting) were associated with CVD in SLE. low bone mineral density we found 81% of
blood vessels by ultrasound scans in In 100 patients with SLE who had patients had available bone density scans
patients with SLE who did not have any undergone ultrasound imaging of blood and 65% had thin bones but that was not
symptoms of CVD, known as subclinical vessels we found 36 had increased associated with presence of subclinical CVD.
CVD. These factors included a past history thickening of blood vessels walls, known as The main findings of this work are that
of pregnancy problems, certain immune atherosclerotic plaque and 64 had no anti-FXa autoantibodies are found less
and cellular factors and the presence of plaque. Overall, 95% were female with a commonly in patients with subclinical CVD
osteoporosis (or thin bones) that has also mean age of 45.2 years. Anti-FXa and that these patients have an increased
been linked with the development of CVD autoantibodies were found in 44% and risk of adverse pregnancy outcomes and
in the general population.
anti-Thr autoantibodies in 31% of all 100 reduced family size. Further LUPUS UK
The immune and cellular factors we studied SLE patients. Anti-FXa autoantibodies were funded research is now underway to
were linked to activation of the immune found more frequently in 33/64 (52%) of understand how anti-FXa autoantibodies
system causing autoantibody formation and patients without plaque compared with influence disease features in SLE and
cellular products known as microparticles 11/36 (31%) of patients with plaque exactly how pregnancy impacts upon
(MP). Antibodies are products of the (p=0.04), whilst there was no difference in patients with SLE.
normal immune system that are normally the presence of anti-Thr autoantibodies

LUPUS UK Legacy Guide

The Guide describes what is vital in the writing of a will and what can happen if people fail to
record their wishes correctly. Almost 50% of adults have not made a will and their estates could
thus be disposed of in a way that would not have met with their wishes.
The luPus uK legacy Guide does not attempt to offer a comprehensive summary of legacy options
nor does it try to make a thorough and exhaustive resume of present law regarding the drawing-up of
a will. The Guide is a first step; there is no substitute for taking properly qualified advice on such an
important issue.
If you would like a copy please contact National Office on
01708 731251

Use the Awareness Leaflet enclosed to order your


or order online -

Support for increased adoption of belimumab in the

treatment of SLE

In September 2016 belimumab (Benlysta), the first new treatment for lupus in more than
50 years, was finally approved by NICE for limited use on the NHS for certain patients living
with SLE in England and Wales.
As fewer than expected patients have been BR), LUPUS UK, NHS England and GSK suggested as contributing to the lower than
prescribed belimumab, NICE, the University have signed a joint letter addressing some anticipated uptake. Members can read the
of Manchester (acting on behalf of BILAG- of the main issues that have been letter below:

If you are having difficulty reading this letter, it can found
on our website or call/email National Office to request a copy.

Freedom Insurance

Providing Travel and life Insurance for Charities and their members

Most Freedom products feature a programme This involves no extra cost to the customer.
that donates part of the revenue it earns to In this way Freedom hopes to make a small
the particular charity through which the contribution to each Charity’s valuable work
business was introduced. in research and support.
Tel: 01223 454290

Fundraising Focus

We would like to thank ALL those who
fundraise for us tirelessly and only THe luPus uK
space prevents us from listing everyone.
This report shows funding of £250 FuNDrAIsING PACK
and over received between If you are thinking of holding a fundraising
1st January to 30th April 2019 event and would like a Fundraising Pack
please contact National Office.
Janine Hirsch, Fundraising Manager.

ImPOrTANT INFOrmATION If you apply to take part in a LUPUS UK guaranteed place event, can you please
consider whether you can raise the required level of sponsorship? A number of participants have been unable to do this during
the past twelve months, which means that LUPUS UK has not received the sponsorship that it should have but also, on some
occasions, has lost money. LUPUS UK now has a fundraising agreement in place that applicants are required to sign, confirming
that they will raise sponsorship to the agreed figure.

£ £ £
Dr. W. Finlay, Legacy 30,000 Stage Struck Speech & Drama, Colin Challinor, Skydive 425
The James Tudor Foundation 5,000 Fundraising Event 650 Janet Jackson,
Erin Venison, Sponsored Hair Cut 3,820 Jamie Kavanagh, Collier Row Line Dance Classes 400
Great Aberdeen Run 10k 630
Christine Anderson, Legacy 3,000 Jannine & Darren Jones, Tough Mudder 397
Albyn School, Scotland, Donation 628
Constance Paterson, Charitable Trust 3,000 HMP Frankland, Wellbeing Day 350
Diane Lewis, 60th Birthday Celebrations 625
Holly Eyles, Lorna Gascoine, Kilt Walk 305
Gala Dinner “Dress to Impress” 2,600 Natalie Irvine, Scottish Half Marathon 615 Peter Leak, 5 x 10k Races 475
Valero Energy, Matched Funding 600
John David Abernethy, Adam Morland,
Sponsored Beard Shave 2,222 Zara Dalton, Derry 10 Mile Run 592 Bournemouth Pier to Pier Swim 435
Hope Carey for Erin Venison, Hair Cut 2,000 Ryton Golf Club, Captains Charity 585 Ian Harvey, 3 Peaks Challenge 430
Gary Wai-Bond Fong,
Marilyn Patricia Keech, Legacy 2,000 Helena Mitchell,
Great Manchester Run 571
South Eastern Counties Keep Fit Cynthia Evans, Craft Sales 570 Applause for a Cause Fundraiser 369
Association, Various Fundraising 2,000 Mr & Mrs. Williams
Katharine & Robert Pearce,
Paul Howard, 10 Half Marathons 1,780 Robin Hood Half Marathon 570 60th Wedding Anniversary 350
Dave Surtees, Leeds Golf Club 1,750 Chris Leeman, Julia Nauer, Yorkshire 3 Peaks 345
D.W. Thomas, EAMS Marathon/Tollymore Ultra 555 Katie Napier, Colour Obstacle Rush 330
70th Birthday Celebrations 1,675 Alicia Smith, Quiz Night 550 Demi Marsh, Skydive 320
John David Abernethy, Beard Shave 1,632 Lais Davidson, Tough Mudder Half 540 Aira Ansell, Afternoon Tea 315
Fowler Smith & Jones Trust 1,500 Georgian Lodge, Donation 520 Brenda Brown,
Clare McKendry, Ball 1,200 Les Jackson, Return 2 Snowdon 519 In lieu of 80th birthday presents 312
Bronwyn Lee, Skydive 1,033 Andor Charitable Trust 500 Divisional Recorders Conclave, Donation 300
Hugh Fraser Trust 1,000 Barleycorn Trust 500 Marion Hewitt,
Minal Gopal, Ealing Half Marathon 955 Blaydon, Ryton & Whickham Cake bakes and Coffee Morning 300
Yvonne Knight, Fundraising Evening 890 Rotary Club, Donation 500 Trudel Bateup,
Janice Irvine/Sylvia Olver, Skydive 885 Helen Clements, The Fox Inn, Doves Barn Nursery Donation 286
Maud Elkington Charitable Trust 750 Fundraising Evening 500 SES Water, Raffle 281
John Longden, Donation 750 HSBC, Matched Giving 500 Pam Mahill,
Nicholas Britton in support of The Lawson Trust 500 Redbridge Institute Book Swap 270
Erin Venision aged 8, Haircut 720 The Lynn Foundation 500 Sophie Jones, Walk Up Snowdon 255
Sonya Elnaschie, Ladies of Townhill & Kingseat Easyjet, Adrian Twigg Recommendation 250
Tough Mudder Stratford 715 Parish Church, Donation 500 Lycetts, Charity Grant 250
Pat & Alan Marshall, Golden Wedding 710 James Wise Charitable Trust 500 Mazars Charitable Trust,
Madelaine Murphy, Lady Captain Michael & Anna Wix Charitable Trust 500 Matched Giving 250
Seaford Head Golf Club, Donation 700 Lisa John, 26 Mile Walk 468 Adrian Twigg,
Hannah Evans, Pontypridd 5km Bounce 657 William Howarth, Charitable Settlement 450 Easyjet Company Donation 250

NGES 2019201920192019
Regional Fundraising of £250 and over we have received donations
in memory of the persons
NAme reGION eveNT AmOuNT £
mentioned below and our
Iris Downey West Midlands Table Top Sales 1,600 sincere thanks and condolences
Alison School of Dance West Midlands Donation 500 go to their families and friends.
Julie & Jessica Evans West Midlands Craft Fair 406 Carol Abernethy, Christine Anderson,
Solvey Ltd. West Midlands GAYE 400 Lin Blezard, Gwendoline Brakespear,
Ken Ainsworth East Midlands 70th Birthday 300 Brenda Brooks, Mr. A Broughton,
Mick Broughton, Sandra Bruce,
T. Halls Devon & Cornwall Donation 250
Dennis Burse, Amy Sarah Carter,
we would remind Groups and Fundraisers that if you are approaching National Companies Denise Chandler, Colin Clements,
to sponsor events or for donations, please contact Janine at National Office in the first Trisha Cloutman, Libby Collins,
instance as we wish to avoid duplicate requests which make us appear unprofessional. Michael Cross, Gregorio D’Angelo,
Christine Davies, Sharon Davies,
Pauline Dias, Mary Donovan,
Gerald Dunleavy, Jenna Edwards,
David Flatman, Jennie Ford,
OVERSEAS 2019 David Garner, Doreen Gatherer,
Hilary Gooch, Donald Graham,
Helen Graham, Mr. R. Gregor,
Mary Hextall, Carol Hines, Irene Hiscock,
Donna Ivill, Daphne Jackson,
Carol Jacobs, Pamela Jacobs,
Mark James, Lindsey Johnson,
Albert Jones, Susan Kilner,
Jane Lambert, Elizabeth Long,
Mark Lord, Jacqueline Maddocks,
Patricia Ann Marsh, Del McKenna,
Sylvia Mitchell, Pauline Obi,
Frank Osborne, Anne Palmer,

Graham Plummer, Mrs. W. Pollard,
Chris-Ann Pullen, Michael Reddan,
Jennifer Riddle, Michael Shelton,
Catherine Slack, Phyllis Smart,
Mr. Spencer, Pamela Stone,
Trek to the summit of Richard Sweet, Susan Unsted,
Kilimanjaro - FREE! Kathleen Watson, Richard Williams,
Lynne Walker, Mrs Wall,
Catherine Young
If you have ever wanted to undertake an wildlife, breathtaking glaciers and
exhilarating challenge for charity here is experience something others will only ever
your chance. LUPUS UK are looking for dream of. For those of you with a sense of GIFT AID
adventurous volunteers to trek to the adventure and the desire to do something
summit of the World’s tallest free-standing challenging for a great cause simply give Many of you have already signed for

mountain, and if you raise enough in us a call at the office on 01708 731251 Gift Aid but please ask anyone who is
sponsorship you will get to take part for and we will send you a full information sending in a donation or completing a
free! Be prepared to immerse yourself in pack and everything you need to take
the tranquillity of the jungle, spectacular part in the experience of a lifetime. sponsor form to sign (providing of course
they are a UK tax payer). Please ensure
all those who sign for Gift Aid enter their
full name, home address and postcode
as we are unable to make a claim if they
are not complete or show a business
address. Regional Groups can send all

Further information from signed declarations here to
LUPUS UK on 01708 731251 National Office and we will process them.
or visit our website
where you can book online For this period we have collected


Tony Rance attended a cheque presentation in Aberdeen at the Albyn School and gave a short talk.
Over £600 through various fundraising events was donated to LUPUS UK.

Although we do appreciate your
photos, unfortunately we cannot
include them all, due to lack of
268C space and on occasion because
the quality of the print
will not reproduce.
If you would like your event
advertised on Facebook or
Instagram please contact
Reg. Charity Nos 1051610, SC039682 Chanpreet walia, at
[email protected] and
she will be able to help you.
For further details please contact Susan Dewerson:
Telephone 07860 618016
Charity Numbers
Email [email protected]
1051610 SC039682
We can accept any of the following: Take a look
in the loft.
Any Stamps, old Envelopes**, First Day Covers, You would be
Postcards** (including Pre-1940s Birthday Cards amazed how much
and World War 1 silk cards**) - used or unused. that old junk could
GIve As YOu eArN
Please leave a 5 to 8mm border around stamps. raise for a good
Don’t forget if your employer operates
**If foreign stamps (of any date) or UK stamps cause!
the Give as You Earn Scheme you can
postmarked BEFORE 1970 are on envelopes or
join and give to your favourite charity -
postcards - DO NOT REMOVE THEM! They may be worth
more as a collectible item complete.
just £1 per month will make
a lot of difference.
Coins and Bank Notes - any and all, old and new,
For the period For the period
from ANYWHERE in the world, obsolete or otherwise.
1st January to 30th April 2019
Precious Metals - including broken jewellery, old
trophies, gold, silver etc. we have raised
Medals and Badges - any, and not limited to military
items, other medals and badges accepted.
Costume Jewellery - is accepted.
Keys and Locks - any age or types.
Metal Cutlery - any Metal Toys, Ornaments & Cutlery -
any age, type or condition.
Go to,
Watches - Quartz or wind-up, working or not.
where money is donated to LUPUS UK
every time you shop online and use
one of the listed companies.
To arrange collections (over 5kg), please telephone 0845 257 0813, Mon/Wed/Thur/Fri, 9am to 5pm.
This will not cost you any extra as
Small lots / donations can be mailed, direct (ensure correct postage is paid) to:
To arrange collections (over10kg terms and conditions apply) these companies will pay us from their
*Stamps N All, Dept LUPUSUK, PO Box 245, Plymouth, PL5 2WX
Please telephone 01752 296369 Monday or Thursday 9am to 5pm. profits - it’s a win/win situation.
*NOTE: Please include sender’s name & address (details for internal use only & will NOT be passed to third parties).
Just have a look at their website
Stamps N All is a recycling specialist - assisting charities, groups and clubs with their fund raising.
using this link
If you feel that your organisation might benefit from the Stamps N All zero cost** fund raising solution,
please call David on 0845 257 0813 to discuss how Stamps N All can help you. **Terms & Conditions apply.
Stamps n All (Sole Trader), which means that all goods donated to Charities are paid for, but the sole trader profits from goods purchased
and shop to your hearts delight!

2019 Jasmin King 8,926 Coffee Morning Success
Nathan Kirk 1,795
Georgia Lewis 674 Fiona Henry’s coffee morning in May was a
Lisa Magennis 4,703 huge success! Between her Just Giving page
and donations on the day the fantastic sum
Lee Mattravis tba of £1,437 was raised. Fiona is pictured with
Lauren Millar 55 her sister, Angela, holding the cheque.
Karen New 469
£ Amelia Newman 1,780
Ed Back 2,582 Jonathan Plowman 1,900
Ross Baker 3,652 Louise Potts 1,471
Gary Bennett 3,806 Tamzin Readman 2,312
Callum Browning 1,333 Ian Roberts 1,785
Amy Carline 972 Daniel Routledge 1,250
Sean Cavanagh 1,585 Francesca Taylor 2,320
Shaun Clark 767 Lin Taylor 2,021
Louise Cole 1,304 Alex Thornton 1,510
Michael Cooper 1,090 Victoria Tindall 1,471
Emma Davies 115 Sam Tonks 1,956
Angela and niece,
Cam d’Espagnac 1,944 Katy & Paul Wakefield 4,810 Maria, helped raise
James Garland 1,296 Rohan Walker 1,317 funds by having
Tony Henebery 1,302 Lyndsey Weller 1,743 their hair cut for a
donation; the hair
Ella Hughes 1,862 Andrew White 1,261 was donated for
James King 2,246 Imogen Wyatt 1,471 wigs. Our thanks to
all who helped
Not all of the above runners are Golden bond runners. some are public ballot runners who make this donation
secured their own places possible.

Go That Extra Mile London 2019

On Saturday 11th May 2019 Christine, Chanpreet, Janine and Paul from
National Office were joined by over 170 people for a massive Go That
Extra Mile sponsored walk in London as part of our observation of World
Lupus Day. Everyone braved heavy rain showers with brilliant smiles and
we had a great time raising awareness of lupus in our capitol city.
The final total raised by everyone taking part was a phenomenal
£16,566.50! We are extremely grateful for the tremendous effort
of all those who were involved and look forward to seeing lots
of you again next year.


Our Wonderful London Marathon Runners and Supporters


Our Wonderful London Marathon Runners and Supporters


Paul’s 10 Half Marathon Challenge Colchester Half marathon - March 25th
(COMPLETED IN 1:56:47)
On November 11th I completed my tenth and Norwich Half marathon - April 15th
final half marathon of 2018 in support of LUPUS (COMPLETED IN 2:02:52)
UK and in memory of my friend Heather who milton Keynes Half marathon - May 7th
sadly passed away after her battle with lupus in (COMPLETED IN 2:17:46)
February 2008. Hackney Half marathon - May 20th
(COMPLETED IN 2:07:37)
wimbledon Half - June 3rd
(COMPLETED IN 2:17:25)
Clacton Half marathon - August 19th
(COMPLETED IN 2:18:23)
Great east run (Ipswich Half marathon) -
September 16th (COMPLETED IN 2:32:07)
monster Half marathon (ely) -
September 30th (COMPLETED IN 2:02:24)
luton Half marathon - October 28th
(COMPLETED IN 2:03:52)
was worth it to raise awareness about the
condition - I had lots of people come over Grand union Canal Half marathon -
and talk to me and ask about lupus. November 11th (COMPLETED IN 2:06:21)
It has been a gruelling year of running in I am incredibly grateful for all of the Frances for completing her first ever half
which I have clocked up over 350 miles support I have received; the many people marathon with me in Ipswich. I am pleased
when I combine my training and the races who have sponsored me and donated to to say the final total raised for LUPUS UK
themselves. The hot summer made running the charity, those who came along to cheer was £1,780.
in the costume even more difficult, but it me at events and to my amazing wife Paul Howard
Some of our Wonderful Fundraisers Charles
Dilworth from
Glasgow took
Angela Giglia-Williams Pictured l-r, Tracey Whelan, part in the
son, Alessandro and Lewis Whelan, Philip Gung Ho 5k in
friend Rob completed Whelan, Jack Kelly and May and he
a 57 Mile Cycle Ride Casey Whelan following has raised just
and raised in excess completing the Cork City over £400
of £650 Marathon as a group
raising £750 so far

Zara Dalton
from Derry has
raised nearly
£500 following
the Derry
10 Mile Run.
Diane Lewis hosted a
fundraising event in March
to mark her 60th Birthday
Chris Spong ready to take on to raise funds for both Lynda Garman and her
the Belvoir CastleTough LUPUS UK and the Multiple daughter Diana Anderson
Mudder in May Sclerosis Society. Charging took part in the Jurassic
guests for entry and holding Coast Challenge
a raffle, together with Regular fundraiser Debbie Pentland accepting a
sponsorship by District cheque for £492.50 raised by friend Stan and
Gary Wai-Bond Fong took part Financial Solutions and letters others at her Tai Chi classes which included £55
in the 2019 Great Manchester written to Swansea Valley Rotary from Pauline who makes Greeting Cards and
Run and raised £600 Club, Gnoll Masonic Lodge and sells them to raise funds for the charity.
St Gwynno Lodge, and monies
raised by a darts team and
family, a total of £625 was
received by the charities.

Joe Rush from Hinckley
centre took part in the
Belvoir Castle Tough Mudder
2019 in support of his friend
Kevin who has lupus.

Leeds Golf Club support LUPUS UK 

Captain Dave Surtees, pictured top middle, members and visitors of
Leeds Golf Club helped raised a magnificent £1,750 for LUPUS UK.

From the age of 19 I had a number of was and was very naive at first until I was great success
investigations and was diagnosed and seen by Rheumatology in November 2016 including race
treated for IBS, endometriosis, fatigue and who confirmed the diagnosis and was nights, bands
migraine attacks. I was made to feel like I started on treatment immediately. and karaoke
was making my symptoms up and called a and done
hypochondriac. I was told all I needed was a Since then life has been a whirlwind and at numerous bar
holiday and to stop putting a hot flannel on times I felt out of control and now have collections.
my face causing a rash. This is a very similar numerous secondary conditions to lupus,
story to those I have read from the many some have caused me to be in hospital. I was pleased
people before being diagnosed with lupus. Along with others I battle each and every to send
day to continue a normal working life that LUPUS UK a cheque totalling £1,750 and
In September 2016 following a day only those with a long standing condition would like to thank all the members and
procedure I could not recover and a couple will understand. visitors to Leeds Golf Club, but personally I
of weeks later I attended my usual GP would like to thank my parents, family,
Surgery, only this time I was seen by a In March 2018, my lovely dad Dave partner and friends for all the support you
locum. She listened to my symptoms, Surtees was voted for Captaincy of Leeds continue to provide me.
examined the rash on my face and carried Golf Club in Roundhay (we are all so very
out blood tests. The following week I was proud of my dad). As Captain he could This charity is very close to my heart and I
asked to attend the GP Surgery where I choose a charity and chose LUPUS UK. hope the donations help find a cure.
was informed that one of these was for During the last 12 months, my dad has Thank you
lupus for lupus. I did not know what lupus arranged various charity days with Lindsay Surtees

Cycle from London to Paris for FREE!

If you have ever wanted to take part in an the most magical places on earth. The sense of
exhilarating challenge for charity here is your achievement you’ll experience will be one you’ll
chance. luPus uK are looking for adventurous treasure forever.
volunteers to cycle from london to Paris
connecting two of the worlds most chic cities For those of you in search of the challenge of
on one of the best cycling routes in europe! a lifetime simply give us a call at the office on
Cycling through beautiful English villages and into 01708 731251 and we will send you a full
stunning rural France you’ll pass historical information pack and everything you need to
landmarks and famous battlefields from World take part in this fantastic event, or register via
War I until you reach Paris, undoubtedly one of our website: An unforgettable experience
awaits you

Recycle your ink cartridges and mobile phones

Using Recycle4Charity you can recycle your used even arrange for a box of wanted items to be
inkjet cartridges and mobile phones to raise money collected, free of charge!
for LUPUS UK and protect the environment.
You can monitor your account to see how much
It’s very easy, you just need to go to the LUPUS UK you’ve raised and each quarter an automatic
profile on their website and register online. You payment will be made to LUPUS UK.
can order freepost bags to return your items in, or
Raise free funds for LUPUS UK when you shop with Amazon!

As more and more people now shop online, purchase price to your favourite charity - but you can change your preference at
you can help raise funds for LUPUS UK by LUPUS UK. any time.
using AmazonSmile. A simple and automatic How does it work? Amazon states that these donations are
way for you to support the charity every made at “no additional cost to customers,
time you shop, at no cost to you. When you For the donation to be triggered, you must vendors, sellers or participating charities”.
shop at, you’ll find the visit When you buy
exact same low prices, vast selection and qualifying items Amazon will donate 0.5%
convenient shopping experience as of the net purchase price, excluding VAT,, with the added bonus that shipping fees and returns. The choice of
Amazon will donate a portion of the charity is made when you first visit the site


PICNIC - AFTERNOON TEA CHEESE & WINE Phil Totham pictured with Basingstoke West
District Cubs Scouts - Contact Teresa Spurling
EVENING - COFFEE MORNING (aka Raksha... Leader at 24th West District)
received a cheque and monies for £220
following his talk on behalf of LUPUS UK.
Why not host a Lunch4Lupus event with and really impress their guests by hosting a
your family and friends and invite guests to dinner party.
make donations to LUPUS UK? Make it a You can request a Lunch4Lupus pack
fun event and spend quality time with your online at or by
family and friends while supporting your calling National Office on 01708 731251.
charity. You could also hold a raffle, We will send you a fundraising pack easysearch is completely Free and,
auction, or other fundraising event on the including: invitations, tips for hosting a by making just 10 searches
day. If lunch isn't possible, members can successful event and a complimentary a day, you could raise around £20.00
host a coffee morning or go the 'full monty' apron for the host/hostess a year for luPus uK.

THe THrIll OF A lIFeTIme

AND rAIse mONeY FOr luPus uK!

WANTED! No experience is required and if you
Help us raise funds by making an
exhilarating 10,000 feet freefall
parachute jump.

raise the minimum amount of
sponsorship you will get to jump for

For a free information pack call
Adventurous luPus uK
people throughout the UK 01708 731251
to do something like this.......
for FREE!

E ven t s organ is ed b y S KY LI N E Profes s ion al Even ts Organ is ers

STOP PRESS - if you would like to be involved in other exciting For details of any of these events, ring our Fundraising
activities, i.e. three/four peaks challenge, coast to coast Manager, Janine Hirsch on:
cycling, mountaineering, multi activity weekends and much
more, a brochure is available from Outdoor Pursuits with 01708 731251
something to suit everybody. 268C


On Sunday 19th May Martin Simms completed the Nottingham
Outlaw triathlon which is a 1.2 mile swim, 56 mile bike ride and a
half marathon run. Martin described it as the most gruelling thing Getting married?
he’d ever done in his life. As a result, the fantastic sum of £1,155
has been raised so far in support of LUPUS UK. Martin’s partner, we now provide ‘wedding Favours’ for couples
Karen, has lupus and it had a devastating effect on both their lives who wish to donate to luPus uK and have
two and a half years ago when it attacked her kidneys, but thanks
to research produced a folded table card, which can be
and medical personalised to the individual event. In some
advances, they cases the couple have purchased the butterfly
were thrilled pins as well as making a donation,
to be able to and then attached these to the cards.
run down the
finish straight
together as
Karen is in
recovery and
back running
again herself.
The cards can be used for a number
of different occasions and are not
limited to weddings.
If you would like further information
please call National Office.

We also work with Virgin Money
for online giving and donations
via their website You can set
up your own fundraising page
and ask your friends and family
for sponsorship, or send
LUPUS UK a donation.
JusTGIvING For this period we have
collected £8,842.83 via Virgin
We use for on-line fundraising and donations. Money Giving.
Visit Instructions on how
to donate/set up a sponsorship page are on this website
and if you open a fundraising page please london to Amsterdam
let Janine have the details. There is a “Donate now”
button on the homepage of the LUPUS UK website cycle for Free! which links directly to JustGiving.
If you have ever wanted to take
For the period 1st January to 30th April 2019 we have part in an exciting challenge for
collected £63,488.69 via the JustGiving website. If you do charity here is your chance.
give a donation through JustGiving please do not tick the “no We're looking for adventurous
further contact” box as your donation will then be sent to us volunteers to cycle through three
anonymously and we cannot acknowledge receipt. We do of Europe’s most vibrant and well
not place anyone on our database unless they specifically known cities! The challenge
ask to be included. All one off donations will receive an begins on the outskirts of London,
acknowledgement, but contact details will not be used for then on to the continent where
mailshot purposes, or passed to any third party. If you wish you'll cycle along the famous
to make a one off payment to LUPUS UK it is more canals of Amsterdam before
cost effective to send it heading to the beautiful city of
direct to us by post or Brussels. For those of you in search of an exciting challenge
via the LUPUS UK website just give us a call at the office on 01708 731251 or email -
www.lupusuk.or [email protected] with your home address and we will
send you a full information pack and everything you need to
as JustGiving do charge take part in this fantastic event.
a commission and we cannot
always identify the donation. An unforgettable experience awaits you.
book via our website

Vicky Mitchell and friends took on the
IN ASSOcIATION WITH beautiful Scottish countryside and raised
funds for LUPUS UK by joining the Aberdeen
Kiltwalk, the big stroll (15 mile walk) in June.
So far they have raised a staggering £1,921.
One of the Lupaneers was 71 and finished
the walk before the rest of the group. Well
done to all and
thank you so
very much.

Minal Gopal and
her two sons
Dhian and Jayme
completed the
Ealing Half
Marathon and the
boys did the Mini
Mile raising a
fantastic £950

Stefano Pozzi
completed the
Half Marathon
and raised
over £500 for
If you are interested in the Big Fun Run please visit our website where you will find the charity
all the venues and dates listed.
Chosen Charity of the year by the Cheam Division Trefoil Guild

LUPUS UK is the 2019 chosen charity of the year. South London Regional Co-ordinator Attendees engaged in the Lupus Talk from
year for The Cheam Division Trefoil Guild. In Laura Sinnett (seated) gave the presentation. different perspectives whether it relates with
Trefoil Guild, women and their own overlapping
men aged 18+ make new symptoms of hidden and
friends, travel, explore, invisible illnesses, being
serve their communities affected by lupus
and help Guiding and themselves, discussing
Scouting thrive across the family members becoming
UK. There are over 1,100 medical researchers in this
Trefoil Guilds with over field, or just looking
20,000 members forward to spreading the
regularly meeting up. The word on the lupus cause.
AGM in Cheam was a There were razzle dazzle
wonderful platform for a hands all round in antici-
Lupus Presentation as the pation, adorned with
forerunner to events LUPUS UK purple sashes.
raising lupus awareness 268C
and funds throughout the


Thursday, 4th April, a group of patients involved with MASTERPLANS attended a Meeting at

The Studio, Birmingham, where several Researchers gave presentations on their work within
the project. The patients, including Elaine Holland and Yvonne Norton (LUPUS UK Trustees)
and Peter Norton (LUPUS UK Hon. Member), found the presentations most enlightening and
gained a good insight into the work taking place ‘behind the scenes’.

Thursday, 4th April, a group of patients had they not been present the previous day, Patients present at the Consortium Meeting
involved with MASTERPLANS attended a there was little of the content of these received certificates from Prof Bruce
Meeting at The Studio, Birmingham, where presentations that they would have acknowledging the time and work they
several Researchers gave presentations on understood - the differing levels of have invested in the MASTERPLANS project
their work within the project. The patients, knowledge between patients and the during the past year.
including Elaine Holland and Yvonne Norton MASTERPLANS medics really being Yvonne Norton
(LUPUS UK Trustees) and Peter Norton highlighted.
(LUPUS UK Hon. Member), found the During his closing Talk, Prof Ian Bruce
presentations most enlightening and gained
a good insight into the work taking place (MASTERPLANS lead) assured everyone that
the researchers are on course to present
‘behind the scenes’.
predictors of responses to Mycophenolate
The following day, Friday, 5th April, a Mofetil (MMF), Belimumab and
Consortium Meeting had been arranged Epratuzumab to the Medical Research
during which there were further presen- Council on the due date, 30th June 2019,
tations, some by the previous day’s and he is pleased with the progress of the
Speakers, and, supposedly, covering the project heading towards finalisation during
same work. The patients were agreed that, December 2019. Researchers Lay Review Day

Consortium Meeting PPI Group Lay Review Day

place to discuss interesting topics with other people affected by
lupus. In essence, Facebook has allowed LUPUS UK to get closer to
our members. We can now share information more easily and we
Our Facebook page currently has over 32,400 ‘likes’ can bring people together for support in new ways.
and growing every day. If you’d like to get involved with LUPUS UK on Facebook,
then please go to:
Facebook continues to be a fantastic way to share updates about
LUPUS UK more regularly and with a wider audience. It has been
very good for promoting events too. If anybody is holding an You can also
awareness or fundraising event that is open to the public, then we
can share the details with all of our followers. By doing this we
have already seen an increased interest in some events.
The Facebook page also acts as a forum and it can be a great @luPusuK
LUPUS UK is now on Instagram

we have joined the social media, picture-sharing site Instagram.
Our username is @lupus_uk please come and follow us and say hello.
We will be sharing facts about lupus, photos from events and fundraisers as well as having conversations
about various aspects of living with lupus.

Education and Life with Lupus - Amy Baker

I was diagnosed with lupus, (SLE), in 2007 just two weeks
before my GCSE’s started at the age of 15. I had been poorly

and under the treatment of Great Ormond Street Hospital for
around two years previously, with an initial diagnosis of
Raynauld’s. They had given no indication to me that they
suspected lupus, so the diagnosis came as a great shock.

When my mum informed my school of the way to kick me off the trip, in turn meaning
matter, we applied for exam concessions that I was unable to complete the award.
which were declined by the boards, After this my mum started dealing with my standard of my work up and meet
apparently this wasn’t a good enough Head of Sixth Form and we couldn’t have deadlines in time. I’m still grateful for the
help and support I received from him.
reason to cause impact to my exam had more support from her if we tried. We Sometimes, when you have a disability,
performance and therefore life at school worked out a way with my timetable to there are people during your life who hold
seemed to carry on as if nothing was allow me extra sleep in the mornings when a special place in your heart because of
happening. They were good with days off I had free periods, she was always the support they give you. It’s often the
for hospital appointments and understood checking how I was doing and whether she case that one is left struggling to keep up,
when I would fall ill more regularly than could do more to support me. When I left whilst simultaneously battling with superiors
my peers, but the subject was never at the end of my A-Levels my mum bought who do not offer support and challenge you.
her a huge bunch of flowers to say thank During my lowest point in my Foundation
I had completed the Bronze Duke of you and I think all three of us just stood Year I had a meeting with the disability
Edinburgh award before diagnosis and outside her office and cried. I still talk to team to ask for advice on what I should do,
was embarking on the Silver award when I her now and was Bridesmaid at her and without hesitation the officer told me
was approached by the Head DofE Officer daughter’s wedding last summer. She still to drop out. There was no discussion, no
at our school. She told me that she had asks how I am, and she always tells me how trying to find other options, or offering
been informed of my diagnosis and that proud she is of me now. Her support made comfort and support that this may pass. I
she, too, had lupus. I was encouraged by life a great deal easier during my last was told point blank to leave University.
her approach to see that there was years at school, she got me concessions for Obviously when I talked to my Head of
somebody around who would understand my exams and kept all my teachers Year he was mortified and convinced me to
and be there to support me. I could not informed so that I never had to have stay and I’m so glad he did. At the end of
have been more wrong. On the DofE Silver multiple conversations with them. the year I got amazing results and even
Expedition I really struggled. I had started My education took a long break after I left won the Foundation Prize, and never in my
to experience severe shin splints which sent school, I moved to Bath and worked in life had I ever been so proud of myself. At
agonising pain through my legs as I retail for several years before I had to school I was an underachiever, I was
walked, a friend helped me during the give up work and move back home. My ashamed at my results, but now I was
walk by bandaging my legs in the hope lupus had flared up severely and it took facing my health straight on and challenging
that it could help control the pain. About two years to get it back under control and it. I was saying to the world that yes, my
half way through the second day we had regain body strength. lupus can rock my world, and I will always
met up with the woman in question and I find things infinitely harder than my peers,
asked her if I could go back to the I broke this fast with a Foundation Degree but that does not mean that I am inferior.
campsite in the van as I was in too much in Architecture at a University in London. I
pain to carry on, and she refused. I was had an introductory meeting with the I am now in my first year of
dating somebody in another group at the disability team to discuss my needs and Undergraduate studies in Architecture
time and she accused me of wanting to get how they could make the course accessible thanks to the support and encouragement I
back just to see him. I had to carry on for me, and this was followed up with a received from my previous tutor. I had
walking the final five miles that day in long assessment for my Disabled Students taken this for granted and when I started
agony, grateful for the support of my Allowance. The assessor was fantastic and here, and I was rocked to my very core by
friends. got a true understanding of my lupus and the attitude of the higher levels of staff at
needs; he arranged for certain equipment my new University. There are three sides of
Our second trip was set in late winter and and software to be provided as part of life at this university: my Degree, The
during the walk we experienced an my allowance that has helped me massively Disability Assessors, and the social life.
unexpected snow storm, the paths were icy, during my time at university. I am able to
and I was dreading the idea of sleeping in work from my room on bad days, rather My degree is intense, and this is to be
a tiny tent covered in snow. I begged her than trying to struggle in to class. expected from an Architecture degree,
to let me go home in fear of getting ill, however when I approached the relevant
and she refused, eventually I phoned my The Head of Year for my course could not person in our school, I didn’t receive any
mum who, with my grandad, came and have been more supportive of me, we support or encouragement. I felt so
picked me up, refusing to accept the were in constant communication about my deflated after this meeting and was at
leaders protests that I needed to stay. health and what could be done to help. He odds of what to do, my health was being
allowed me to cut my days in half rather affected by the packed timetable and
I wish I could say that these were the only than four full days a week. Attending the overlapping deadlines and, as a result, my
problems I faced with her, but when I full timetable was incredibly difficult for mental health began to suffer. I sunk in to a
268Cese days improved my
wanted to take part in the Gold Duke of me, but reducing th state of extreme anxiety and depression, I
Edinburgh Award expedition, she found a health and allowed me to keep the felt I had nowhere to go and nobody to

turn to, as whenever I raised the issue with was in a class with many people of a everything that comes with my lupus and
our Head of Year I was ignored. similar age, and my social life was never a other health problems, but this is part and
big problem as many of my friends were parcel with invisible disabilities. I spend a
I tried to run for Student Representative as
I had been one at my previous university, like me in that they didn’t want to go lot of time asking for help from them, and
and I was told not to go forward because partying every night. When I came to my there was a time in my past when I
of my lupus. I have faced a great deal of current University I was immediately thrown massively struggled to be honest when I
discrimination and challenging by authority in to a true ‘uni’ life. Many, if not all, of my couldn’t do things. There is a fear of
figures in my past employment in retail, but friends are younger than me. I am 26 now missing out when your friends are going out
this is one thing you don’t expect to happen due to the delays in being able to finally clubbing, or you’re too tired to join in with
when you’re in an educational setting. You make it to this point in my life, and it is whatever activities they are doing. It takes
expect to be supported, encouraged, and glaringly obvious to me, the differences strength to overcome this, and to know that
lifted to be the best person you can. I was between my story, and the stories of my missing out on these things, doesn’t mean
made to feel the opposite of this, like I was friends, who are here straight from school. losing your friends. If they are true friends,
being told that I can’t do these things At first I was trying to keep up, to go out they understand, and they will find ways to
because I have lupus. often, to spend time doing certain things do things with you that you are able to do.
that people want to do when they have There is something in your gut that can tell
In my years of living with lupus I have been moved away from home for the first time. It you who will be there to support you, to lift
able to grow a thick skin, when people tell has taken me a long time to find a good you up, and help you. That same gut will
me I can’t do something on account of my group of friends who are sympathetic, who tell you the people who aren’t going to do
health, I prove them wrong, and I fight for don’t get annoyed when I don’t want to go these things. Then it’s down to you to find
my rights and the rights of others with out clubbing with them, and who make sure the first people. They are invaluable,
disabilities who want to do the same things that I am looking after myself. especially during education. University can
that I do. I am facing constant challenges in I think it is still hard for them to understand be an incredibly lonely experience,
this course, but luckily, given the lack of especially if you feel that you are not
support I receive within the school of getting support from the authority figures.
architecture, the Disability and Welfare It’s about learning that where there is no
team at the university are incredible.
support, you can find other support. Keep
I have an individual Disability Assessor who fighting, keep working, and always know
I can turn to when I have complaints, when I that whilst a life with lupus can be debili-
need support, or I’m concerned about a tating at times, from it can grow a strength
deadline. She makes it clear that she is on and passion that no other will know. Use
my side, and when you feel as though you every experience as a learning tool on how
are fighting for your rights to do the to adapt and make sure that you are
course, it makes a huge difference to have heard, that people are listening to you.
this external support. Most of all, keep going, never give up.
When I was doing my foundation year I Amy Baker

Katty’s territory

Shared Experiences and Advocating 

When I reflect on my journey with lupus, I think about who or what
would have made the early stages easier! What would have helped
me understand and manage my disease and mental health better.

After my diagnosis there were lots of and experience with peers just enhances advocate and to offer more to young
adults and health professionals guiding me; these feelings. people and create a platform for young
this kind of support is necessary and Peer support and participating in research people to share their experiences.
helpful, but maybe what I needed more with other young people is reassuring and A few of my experiences have been
was someone closer to my age who had comforting, it can confirm that perhaps my shared in previous editions of
been in a similar situation and could experiences aren’t so unique or different! LUPUS UK News and Views magazine. I
empathize with me. Someone who knew the Lupus can be isolating and for young want to contribute to the improvement of
journey I was about to start and who could people with JSLE there are still so many services for young people in my local area,
share their experience. unanswered questions. Being a part of the to help increase awareness of the impact
Through years of coping and with a change process and raising awareness is of long term illnesses and the challenges
degree of self-management I’ve learnt that important for me. faced. I also hope to help create a
the greatest expert in my life is me. I’ve had many opportunities to advocate platform for children and young people
Sometimes things go well and sometimes for other young people like me, through with lupus to share their experiences good
they don’t, but the ultimate outcome is patient participation groups and taking and bad in a positive way.
greatly affected and shaped by me. part in patient research projects. Being my website is one way,
Feeling you have a voice that matters is not able to share my experiences to support or and I hope to create other opportunities to
only empowering it can be part of the help someone else is deeply gratifying. I do this.
healing process, and having a shared voice really want to develop my role as an Katrina Brooks

“Isn’t that a character from Harry Potter?” 

10 Lessons from my 10 Years with Lupus

Niamh O’Kane

1. enjoy the common cold realise in the following years that attending concerts, while I sat indoors
equipping yourself with knowledge, grappling with my new identity. However,
I jest, of course. Nobody enjoys drowning donning information as your armour and looking back a decade later, I realise that
in their own mucus or coughing until their evidence your weapon, is the first step in while I didn’t attend my maths exam, I did
ribs ache. However, for a disease ninja, understanding, and defeating, the monster return to school. I wasn’t able to go
there is a strange pleasure in the cold. you’re up against. banana boating, but my friends could visit
There is a pleasure in showing an in the comfort of my own home. I am more
observable and undisputable badge of 3. look for the good aware now than ever of how incredibly
sickness to the world. The symptoms of lucky I was to receive a relatively quick
lupus do not always present themselves so The young girl with lupus was inevitably diagnosis of a manageable condition; and
clearly, and the sneakiest of them all? somewhat of an attraction in the
Fatigue. It is hard to explain what lupus Rheumatology ward, a corridor with mostly on days where I allow self-pity to creep in,
fatigue is like, especially because older adults, but I was lucky enough to get I think of those battling worse demons, and
everyone experiences tiredness. For a a private room on this ward, it even had for them I count my blessings.
second, imagine you’ve had a long day at its own ensuite! Kindness spread its fingers 5. You can’t pour from an empty cup
work, went to the gym, maybe went out over every corner of this room. A 23-year-
dancing with friends. You get home, kick old patient in for a day procedure on his I was involved in helping run a summer
off your shoes and walk to your bedroom. knee had remarked to his bed neighbours club for young children from my teens to
You know that feeling just before you get “I must be the youngest one here!” and early twenties. It was always an intense
into bed? Where your head aches for a they sent him my direction; he knocked on two weeks,
pillow underneath, your legs and feet are my door, introduced himself, and offered starting at
buzzing with the success of a busy day, me his portable DVD player. The cleaner 9am and often
and your mind is desperate to shut off for saw me watching Family Guy and stopped not finishing
the night. Now imagine you feel like this to chat about his favourite episode. The until 11pm. It
after waking up, and no matter how deep catering staff offered me seconds when would be this
the coffee cup, how big the energy drink, they saw my appetite returning. The junior club which
or how long the nap, you still feel the doctor offered me his phone to watch would deliver
same. This is lupus fatigue, it is not always Father Ted. I was too sick, and frankly too my first
visible, but it is always there. Explaining frightened, to socialise with those outside difficult lesson
this is so incredibly difficult, that it is my lovely little private cocoon, but on my on burnout; I’d
sometimes easier to have the cold. last day when I wheeled homeward-bound give it my all
down the corridor, I received a wealth of in the first few
2. Knowledge is power warm wishes, smiles and waves from the days, then July 2014:
May 2009. The registrar swings into my dozens of strangers who had been rooting slow to the Summer club leader
hospital room, “good news!” I had been for me, unseen, from behind my walls. Two point of exhaustion in the latter end of the
with them for two weeks before they said years later I would visit the same hospital, week. One year, my team sat me down
the word. Lupus. Six months prior, I was only to discover that the room I occupied and insisted that I take the Wednesday
told I had growing pains, then post-viral was - and always had been - in use as a morning off to sleep. I fought with them
arthritis, and finally rheumatoid arthritis, storage room. The nurses had cleared it and lost. My friends could see my limits
but this word was new. “Lupus? Like out for the young girl with lupus. more clearly than I could, which I detested,
Professor Lupin? As in werewolf?” So at but they fought with me because they
least I wasn’t 4. Count your blessings cared. Everyone on earth has limitations,
starting from I was 15. In the weeks prior to hospitali- some more than others, and recognising
nothing. I sation, I was due to sit my GCSE maths. them is not weak. It can be especially
always had an My teacher called the house on the difficult when you face limitations you
interest in morning of the exam and my mum spoke didn’t have last week or last year, but
medicine, and with her. When she returned to my owning them can make all the difference
was chuffed bedroom she would tell me that my maths to your physical wellbeing and your mind.
with having teacher was terribly upset by the news of To this day, and on the most difficult days,
diagnosed my illness. I recall finding it strange, I remember the kindness with which my
myself with because I just thought it was a blip. I friends stood their ground and try to show
rheumatoid imagined that my tiredness would soon even half of that kindness to myself.
arthritis before abate, that I would quickly regain
seeing the May 2009: appetite, or stand up and walk to the 6. move the goalposts
Rheumatologist, Week 3 of my hospital stay bathroom unassisted. As time went on and I Medicine was the goal, but as my A-levels
but it was clearly time to do some fresh entered and exited hospitals, I would approached, I struggled more than most.
research. I would never forget the begin my regimen of medication and read Attending a full school day was draining,
excitement in my registrar’s voice when he all the literature I could find, and as the and I would have very little left to give in
sat with me and explained my diagnosis, reality of my situation became clearer, so the evenings. The blinkers were on, and
268C unfair! My friends
something I found peculiar. How was this did the anger. How medicine was all I saw. So, when I fell a
news anything but bad? I would come to spent the summer banana-boating and grade short in Chemistry, my world came

crashing down around me. I opted to take Mask or not, nobody knows you better planning is important, but no matter how
up my second choice at university, Human than you. hard we try, it remains unpredictable.
Biology. I loved my undergraduate
degree, and resolved to keep the doctor 8. Take a deep breath 10. Gaze at the stars
dream tucked away for later. However, When travelling at 21, a man from When I reflect on my ten years with lupus,
Brussels implored my boyfriend and I to the big successes, the major milestones, are
take a deep breath of Irish air for him obvious. They shine out like the night’s
when we returned home. We did, and it brightest stars, boasting impressive
was somewhat a reality check, of how little victories and resounding accomplishments.
we appreciate our lovely island. I often When you look at the stars in the night sky,
think about The Other Me; the one who your eyes first see the big shiny stars. But
never received the diagnosis, and I wonder when you relax your focus and adjust your
if she’s happier than me. An impossible eyes, you begin to see smaller stars,
question to answer, for there never has seemingly insignificant, dwarfed by their
been, and glittery neighbours. Look for these stars in
never will be, your life. Maybe they are a meal cooked
another me. at the end of a long day, or maybe they
The person I are a good night’s sleep, or that time you
am now is a buttoned your favourite blouse. Whatever
confusing, these stars may be for you, they have
messy, light; and on the darkest days, the days
beautiful when we feel we are losing the battle,
mosaic of when we think lupus has broken us down
everything in and taken all we have, all we can do is
my past, look back and gaze at the stars.
including my
December 2018: illness. So, on
Celebrating becoming Dr O’Kane
days when I August 2017:
two things would happen at university. am tempted to Me and my dog Bailie in
First, I developed a love for research. linger on the beautiful Donegal, Ireland
Second, I watched my boyfriend. He was what-ifs, maybes, or, heaven forbid, the
studying medicine, and I saw him do five possibility of multiverses, I take a deep
days a week, fill his nights and weekends breath of my lovely life, for The Other Me.
with studying, and take up residence in
distant hospitals for weeks on end. It 9. Put away the crystal ball
became clear that the reality of this life Lupus is unpredictable. Unpredictable,
did not match the reality of mine, but I still adjective, meaning ‘not able to be
didn’t want to disappoint 18-year-old me. predicted’. Anxiety, therefore, seemed an February 2019:
I applied for both medicine and a PhD inevitable foe, a natural consequence of a Gazing at the stars in Reykjavík, Iceland
and received unconditional offers for both. future altered. Anxiety would prove a
The dilemma I faced was unbearably formidable adversary, one who reared its
difficult; do I fight the odds and pursue the head at the most crucial and important International
dream of days past, or allow myself to re- moments. Exams, interviews, even social
align my future in light of who I am today? gatherings, would frequently gather an
I chose the PhD, and would go on to audience of shaking, sweating, and Womens Day
become a doctor, albeit a different one. vomiting. At 17, I decided to get help, and

7. Take off the mask began cognitive behavioural therapy The Home Office celebrated International
(CBT). Every second Wednesday, my Ugg Women's Day in March. Deputy Director
Living with lupus is living in a perpetual boots would shuffle across the bouncy People Strategy Lead opened and welcomed
state of reverse Halloween. To onlookers, carpet into the overheated room where I everyone. LUPUS UK were invited to raise
we can be anyone. I could be a healthy would be met with two chairs, a table, a awareness alongside Women's Aid, the
looking 20-something young woman and box of tissues, and some papers. The Gender Equality Network, Menopause
not, in fact, one who feels like she’s been therapist would confirm my anxiety, telling Exchange, Personal Safety Demonstrations,
hit by a truck and stapled back together me I expressed a great deal of “antici- Free Health Check ups, Hindu Connection,
by the truck itself. However, wearing this patory anxiety”. I was convinced The Workplace adjustments and the Home
mask will do me no favours, and so when I Three Ds lurked around every corner; Office's Disability Network ABLE.
started my PhD, and went on to start a disaster, death, and depression. The
post-doctoral job, I was faced with the therapist would ask me how I knew these
daunting task of revealing my weaknesses things were in my future, and I would tell
to relative strangers. I have been lucky to her I Just Knew. CBT taught me to stop
only ever receive kindness and believing in magic; that fears and doubts
understanding as the product of these are not premonitions, but rather a
conversations, but I know others may not perfectly rational reaction to being faced
be as fortunate as myself in who they with a problem bigger than oneself. We
have around them in this world. To those never know what will happen, and a
facing disbelieving friends or callous co- moment spent worrying about tomorrow is
workers, I can only suggest that you do not one we are wasting
268Ctoday. You can never
let these people define you or break you. stop thinking ahead with lupus, and

LUPUS UK Funded Researcher -

Prof Christian Hedrich

Professor Christian Hedrich is an Honorary Consultant Paediatric
rheumatologist at Alder Hey Children’s Hospital (a luPus uK Centre of
excellence). In may 2018 he was awarded a grant of £52,528 by luPus uK
towards the cost of a 12-month study investigating the genetic factors
behind juvenile-onset systemic lupus erythematosus.

Tell us a fun/interesting fact about 2. To determine the influence of genetic organ involvement, treatment responses,
yourself: risk on age at onset, and/or the and/or outcomes.
involvement of organ systems,
Whenever I’ve moved to a new place in the what potential impact could your
past, one of the big local sports teams won treatment responses, disease severity research have for people living
the national championship… It’s about time and outcomes. with lupus?
for Liverpool FC. 3. To compare this information with
data from adult studies to identify Ultimately, our goal is always to improve
what are your hobbies: shared and unique genetic factors to treatment and quality of life for patients.
My wife and I have just moved into a 120- juvenile-onset sle vs. adult-onset sle. The knowledge we hope to gain from this
year-old house, so home improvement is research could help us to make earlier and
more reliable diagnoses and predictions of
fast becoming hobby number one whether what led you to choose this topic disease activity, as well as to develop
we like it or not! When I eventually emerge area for your study? better treatments that are more effective,
from the local hardware store, you might Early on in my paediatrics training, I was with less toxicity and fewer side effects.
find me on my bike, off in a corner drawn to the clinical and therapeutic Blocking proteins that cause inflammation
sketching something largely indiscernible, or complexity of SLE; the challenges that and contribute to organ damage is one
at the local pub exploring the glorious patients face every day, as well as the fact example for potential future individualised
world of British beer. that most (if not all) available treatments and target-directed treatment options in
are of limited efficacy while causing
Please provide a brief overview of significant side-effects. With the invaluable lupus.
your research project: support of my clinical and scientific mentors what are the next steps after this
My research focuses on understanding how over the years, I’ve developed the project is complete?
people develop autoimmune and autoin- experience and skill set to investigate the The project should help to establish a basis
flammatory diseases, with a particular genetic factors involved in lupus. As a to move forward with the development of
interest in lupus. In the past, it was often paediatrician and researcher, I can see new tools for early and reliable diagnosis
assumed that diseases had the same causes that children and young adults don’t just and the development of new treatments.
in both children and adults, but we now get the “mini-version” of adult disease, but We will continue to work with our interna-
often develop illnesses which look similar
know that this is not always the case. while having different causes. In the case of tional collaborators to test our findings for
Sometimes, what we might call the same lupus, genetic differences may be predictive value in juvenile-onset SLE, as
disease regardless of age may be the responsible for early disease onset, more well as to determine whether genetic
result of quite different processes and even severe disease, higher need for immune markers can be used as guides for individ-
require different treatment. This project will suppression, and less favourable outcomes. ualised and target-directed treatments in
look into suspected genetic differences in Only in understanding these differences SLE. The next steps after that would be to
the development of juvenile- and adult- can we become better at diagnosing, design clinical trials to test new target-
onset systemic lupus erythematosus (SLE). treating, and improving quality of life for directed treatments based on the presence
We have three specific goals for the type young people with lupus. or absence of certain genetic factors in
of knowledge this research study will patients.
provide us with: what do you hope/expect to find? We’re very excited to see the findings from
1. To determine the occurrence of gene We hope to improve our understanding of Professor Hedrich’s research study and we
mutations and/or variants in juvenile- genetic contributors to juvenile-onset SLE will share these with you after the results
onset sle. and their potential association with specific have been published.

Pennies make pounds-support your charity

Collecting your loose change is the easiest way to help fundraise for your charity.
A cardboard collecting box is available from LUPUS UK for use at home or if you are
holding a fundraising event. If friends, family or work colleagues would like to display a
collecting box to support LUPUS UK, please give National Office a call and we will pop
one in the post.
Don’t forget, the pennies soon add up and make pounds towards the work of
LUPUS UK - supporting and informing people with lupus and making grants available
for both lupus research and lupus nurses - thank you. 268C



The British Society for Rheumatology Annual Conference 2019 was held at the ICC,
Birmingham, 30 April and 1-2 May.

The LUPUS UK stand was in the RAIRDA up on the Monday, leaving Wednesday wheeled into the lift...... two problems, the
‘village’ situated in the foyer of Hall 4, not afternoon, Paul Howard had attended lift wouldn’t move and the alarm began
exactly the perfect siting, however, it did Wednesday and Thursday and Yvonne and ringing! Regular readers of News & Views
give opportunity to see a large number of Peter Norton had attended on each of the will know that Yvonne is rather prone to
known medics, either because they were three Conference days. During the final being stuck in lifts, what she is not used to,
‘spotted and grabbed’ whilst passing afternoon, all had gone well, there had however, is having the Deputy CEO taking
through to the Poster section or one of the been no disasters, the stand hadn’t fallen photographs of the scene! Thank you, Paul!
food areas or, in several cases, when they down, no drinks had been spilt (ref previous
came directly to say ‘hello’ and check what years) ... then Yvonne decided to view the Note: the lift eventually moved then was
decommissioned for a re-furb!
response the stand was having.
Posters before they were taken down... Yvonne Norton
The BSR Conference is always a good
opportunity to catch-up with Consultants The concierge switched on the stair lift and
opened the rather stiff door. Yvonne went
and medics working in lupus research as into the lift to be met at the bottom by
well as other charities involved with Peter, they spent time looking at the lupus-
rheumatology-based illnesses.
based Posters then Peter went up the steps
Chris Maker had been at the ICC since set- to press the ‘on’ button while Yvonne

Paul, Peter, Chris and Yvonne Peter breaking down the stand Here we go, or don’t go, again!

Lupus Progress Diary-have you got yours?

Available to members, the lupus Progress Diary,
24 pages to record your appointments, current
medications and diary pages.

For your copy please send a minimum of £1
(postage/donation) to luPus uK, st James House, eastern
road, romford, essex rm1 3NH together with your name,
address and postcode.

• i m p o r t a n t i n f o r m a t i o n •

268C 268C
saturday 5th October 2019 1.30 - 4.45pm
Hilton london Tower bridge Hotel,
5 more london Place, Tooley street, london se12bY
expert speakers on a variety of
‘lupus’ based subjects

This will be a ticketed event (tickets are free of charge)
light refreshments will be available

For further details or to book a ticket please email: [email protected]
or telephone Paul Howard on 01708 731251.

World Lupus Day

10th May 2019

Idorsia Pharmaceuticals raises lupus awareness

It started out as an idea to help raise awareness about lupus and ended up as one of
Idorsia Pharmaceuticals employees’ favorite events, ever.

Lupus was not a well-known therapeutic World Lupus Day was just one day,
area for most employees at Idorsia. So for however, weeks later we are still receiving
World Lupus Day, the team was very eager feedback from employees who loved the
to help shed light on this often invisible event, especially many who work in non-
disease and to increase awareness. The scientific areas. They really appreciated
idea started as a simple presentation; it that the team and the exhibits explained
churned and grew and took on a life of its the disease in an easy-to-understand
own and we ended up with a huge event, language. One of the best comments was
over an afternoon, spread across three from a researcher who said, "it's hard on
buildings and comprised of four stations has been approved for use in the past 60 most days, when I am focused on heating
with different topics. The employees years to help people living with lupus. up and refining the solutions to a particular
followed butterfly stickers and flitted from degree, to remember that what I am
working on, may in 10-15 years, help a
station to station to learn more about lupus Station three was a huge wall showcasing patient live a better life."
and what we are doing for the patients. our current clinical study for lupus called
Members from our lupus team - a cross- CARE. Members from the CARE team Many of our employees delivered on their
functional group composed of researchers talked about the trial, highlighting the pledge to help raise awareness, either by
to scientists to doctors to marketing - sharing our content on the social media
staffed each station and took on the role channels or by creating their own. Our
of lupus ambassadors with enthusiasm. social media analysis showed that our lupus
awareness efforts made an “impression” on
At station one: living with lupus, employees hundreds of thousands of people! We are
learned about the symptoms of lupus, the happy that our result was not limited to
internal staff but also helped the outreach
on social media.
Raising awareness and the power of being
able to connect the face of a person with
many countries across the globe where it is lupus to the science of drug development
being conducted and what outcomes we are the reasons why we wanted to do this
hope the trial will accomplish. Employees event. Drug development takes a long time,
were very impressed by the enthusiasm from the inception of an idea to the
from the team and enjoyed learning about realization of a medication, and this event
how we hope to achieve our end points helped cement the importance of what we,
typical patient demographic, and how the as a company do every day, even if the
disease can present in different ways. We with this study. results can be years down the line.
asked the employees to look at the world The last station was about how our investi-
from the view of a patient and to sign pledge gational therapy works. Scientists from the From all of us at Idorsia, we want to thank
cards to further raise awareness for lupus. team explained, for employees with Helga, Amy, Kim, Annie, Sara, Vanisha,
Jade, and Sarah for volunteering for the
different levels of immunology
With the help of LUPUS UK, we met eight understanding, how an autoimmune disease photoshoot and sharing
people living with lupus who volunteered to like lupus mistakenly attacks its own body's their stories, and a special
take part in a photoshoot and to share thank you to Paul for
their experiences of living with lupus. These organizing and helping us
photos and stories became the centerpiece connect with them. We will
of station two, the gallery. The photos were be honoring our pledge to
on easels accompanied by a gallery continue to raising
booklet that told the story of each person. awareness for lupus in the coming months.
Follow Idorsia on social media to see our
Accompanying the gallery exhibit we had efforts and maybe spot a familiar face.
two posters that outlined the history of
lupus, dating back to 460BC to the modern
medical landscape for the treatment of this
disease. It came as a quite a surprise to tissues and how our Claire McGeown
268C investigational therapy
many employees that only one medication potentially could help. Senior Director Life Cycle Leader

Elaine Stewart, South and East Scotland Regional Co-ordinator reports:

I organised an Awareness Stand at the main replacement for Dr Helen Harris since she
foyer at The Victoria Hospital, Kirkcaldy on moved to NHS Lothian so they have been
World Lupus Day. It was good to be back using locums to support Dr McLaren on his
there as we hadn’t been there since Thursday clinics.
October 2015. It really makes such a
difference when we have additional willing
volunteers to host the stand as it’s too much
for one person to do. We were kept busy
with lots of patients seeking information
and advice as they had just been
diagnosed or were going through the I was delighted that the Lupus Nurse, Marie
diagnostic process. My thanks to Amy White popped along to support us too.
Kearns, Mandy MacDonald and Chris Marie runs the nurse led CTD clinic on a
Clarke, local Fife members who came along Thursday morning from 09.00 - 11.30. She
to support and help man the stand. was telling me there is no sign of a

Old Palace of John Whitgift School support WLD

On World Lupus Day the Nursery and Pre The rain held off and the walkers, together community come together to support LUPUS
School pupils from the Old Palace of John with parents and grandparents, challenged UK, and to remember Ashley, who was a
Whitgift School held a Fun Run in memory themselves to walk four times round the Room Assistant at the school for five years.
of Ashley Thompson (a member of the field. Whether they walked, ran or were A magnificent total of £1,447 was raised
nursery staff who died five years ago, carried was up to them! for which we are very grateful.
aged 27). Nursery Manager Jacqui Hines is Thank you so much to everyone who took
pictured with some of the children. part. It was so lovely to see the Old Palace


Eclipse News

The Light Sensitivity Support Group

lightAware card At a recent hospital appointment my request to wait in an unlit
room was being ignored until I produced the card and I was
I have lupus and developed photosensitivity eight years ago provided with a room immediately. These cards are available for
which has had a major impact on my life. I am photosensitive to a minimum donation of £2 (
artificial lighting which has a greater detrimental effect on me
than exposure to sunlight and has resulted in me being unable to lightaware-card/) and I would highly recommend these to all
continue in employment. other light sensitive people, mine goes everywhere with me and
takes so much stress out of daily difficulties with lighting.
Within minutes of being exposed to artificial lighting I feel sick,
dizzy, my pulse races and on occasions my face has become In response to my request for a card, I received many emails with
partially numb. The after effects, which don't always appear information to support my situation with difficulties in the work
immediately, are joint pains, fatigue, headache and more of the place. I was also put in touch with a lightAware volunteer who
usual lupus symptoms. spoke to me on the telephone, offering me support and sharing
her experiences and practical ideas to help. I found the contact so
I experience great helpful and emotionally supportive just speaking to somebody
difficulty in public who understands and lives with the same difficulties.
places when explaining
why I need to be away Since my initial contact with the charity I have contributed to
from overhead lighting information presented by the charity to Public Health England
and frustratingly this regarding the effect of LED lighting on light sensitive people.
seemed to be worse at I can't urge you enough to at least take a look at the website.
medical appointments - There is a whole wealth of information available from the charity
such irony! In a who clearly need our support to continue the excellent work that
desperate bid to find they do for us all.
something to help I
trawled the internet Jessica - East Midlands
and came across
‘lightAware’, a charity Our thanks to Jessica for highlighting the work of this excellent
"...founded to respond to the needs of those whose lives and charity. Members may also be interested to know the LightAware
health have been profoundly Ambassador for Lupus mentioned by Jessica, is a member of LUPUS
affected by the ban on incandescent UK working closely with LightAware.
lighting and the development of
new forms of light."
LightAware produce a credit card Eclipse Badges
sized card which helps to enable
access and raise awareness. we produce these badges with the aim of helping
On one side the card says: members to explain the nature of their condition
and hopefully gain understanding from the
'The holder of this card is seNsITIve TO ArTIFICIAl lIGHT.
strangers they encounter.
as with any accessibility issue, your understanding and The two different badges are for those who only need
cooperation can make a big difference' to protect themselves from UV light, and thus can
and on the other side: wear see-through masks, and those who have to cover
up completely or at least avoid all bright light.
PleAse be lIGHTAwAre
be willing to switch off artificial lighting They are available from National Office at the cost of
£2.50 each plus £1 for P&P (UK only).
let the holder pass through quickly to minimise exposure
to lighting
Please allow the holder to use your toilet. many toilets are
inaccessible to light sensitive people
listen to the person's needs: people are affected in diverse
ways by different forms of lighting
Please adapt lighting wherever possible to the person's access
I was amazed at what a difference this made to me and how
people responded much more readily when presented with it.

Eclipse is now hosted at

SunSibility-Specialists in UV Protective Clothing

‘Stay Safe in the Sun’ is our motto and we all garments are designed to give maximum
use this in a preventative way as well as protection against the sun’s rays (UVA & UVB)
a functional way. Preparation is always and are individually made to order in house
key in order to make everyday outdoor activities here in the UK. Suncreams, sunglasses & wide
easier for those who have to take extra care. brim hats are all available alongside the
SunSibility started off as a Women’s wear UPF50+ collection as well as sun protective
collection which has now expanded into a colourful umbrellas, window films and UV Meters.
and stylish clothing range Over the last 16 years the company has forged
with accessories for all the strong links with both the medical profession and
family, creating a one stop many charities that help them in their product
shop for the ultimate UV development. Committed to providing the highest quality merchandise
Protection. Many members SunSibility believe firmly in putting the customer first and listening to
of LUPUS UK have helped in their wants and needs, which is what keeps this company evolving.
the development of designs So if you do have any ideas, please do get in touch.
and the collection has To view the 2019 collection in full visit: or call
evolved along with the +44 208 224 2299 for a FREE brochure.
awareness of the dangers Quote ‘News & vIews’ to get 10% discount off your first order.
of over exposure to the sun. You can also join us on to keep
Using a specialist UPF50+ and breathable fabric, up-to-date with our products and special offers.


Order direct from National Office
The Facts-lupus (2nd Edition) (Prof. David Isenberg & Prof. Susan Manzi) £7.00 112 pages In depth look at lupus and its treatments

A Patient’s Guide to lupus (Prof. Graham Hughes) £2.00 112 pages Lupus brought right up to date
lupus - The butterfly and the wolf (Strathclyde Lupus Group) £1.00 39 pages Experiences, Hints and Tips
Hughes syndrome - A Patient’s Guide (Prof. Graham Hughes) £1.00 63 pages Comprehensive antiphospholipid
‘so you’ve got lupus’ DvD and booklet (LUPUS UK) Free of charge DVD and booklet for the newly diagnosed
(please add £1 to cover postage and packing)
lupus Progress Diary Free of charge Track symptoms, medications and appointments
(please add £1 to cover postage and packing)
The lupus book* (5th Edition) (Dr. Daniel Wallace) 304 pages Guide for Patients and Their Families
Please order from Oxford University Press – Enter the code AMPROMD9 at the checkout for your 30% discount
up to £5 = £1 up to £10 = £2.75 up to £25 = £4.50 up to £50 = £6.30 Over £50 = £7.50 (uK orders only)
For orders outside the uK please contact National Office for postage costs *Hardback

‘LupusMinder’ App Helps Patients Track 

Appointments, Medications, Symptoms

Effectively manage your lupus with this self-management tool developed with you in mind.
After realizing how many lupus patients had manage your meds and visits - With
trouble keeping track of their medications, lupusminder, patients can keep a log and
daily symptoms and appointments, an review their history during their
interdisciplinary team at the USA based appointment, saving valuable time, helping
Hospital for Special Surgery (HSS) developed communication, and optimizing treatment
a mobile app called LupusMinder. management.
living with lupus - Record symptoms Because patients can also take pictures of
between visits with notes and photos. Share their physical symptoms, such as a swollen
this history with your doctors. joint, doctors can also have improved
access to accurate information.
Track and share your symptoms - List
medications, track side effects and set lupusminder is available free for both
reminders. Note the questions you want to iOS and Android devices via the Apple
ask your doctor. store and Google Play.

Cheryl Marcus - A personal view

The following article is based on a talk I gave last year at a
“Lupus and Hughes Syndrome” meeting. I do hope that maybe
some of the experiences I have been through will be of some help

Briefly my lupus history started when I was painful and worrying symptoms.
25, in 1975. I was married with a baby An added aggravation is that the lupus
son. I then became desperately ill with patient on higher doses of steroids has to
many awful symptoms and this was to lead
eventually to a diagnosis of lupus. Sadly I face the weight gain problems, the moon
then spent many months in hospital being shaped face and often hair loss, and hair
massively over medicated with steroids growth in areas you don’t want!
and my condition not improving. I had All of which makes fighting the medical
major joint problems, severe skin symptoms harder. When I looked in the
involvement, continual infections and an mirror I felt as though I was looking at a
ESR that was through the roof. stranger. But I live to tell the tale! These
I was incredibly lucky that my late father are temporary problems that should be He also found that confiding in his boss
being a GP, after much research, was able addressed by your medical advisors and was an advantage, and he became more
to contact Prof Hughes who was going to the correct advice given. understanding if he had to take time off
then enter my life and gradually reduce I wore a wig for some time and became work. My parents proved a lifeline by
the steroid medication and introduce adept at wearing make-up - these may be selling their home and we sold ours, in
immuno-suppressants and anti malarials, minor things if you are healthy, but major order to enable us to buy a house
plus intense physiotherapy to get my if not. Your confidence can be boosted together so that they could help look after
mobility back and then very slowly I was so much. me and my little boy.
able to return home. It was beyond our expectations, but so
Although I have found that having lupus
I often complained to Prof Hughes about and using make up can also be willingly accepted. Some years later when
the loneliness of having an illness that I became stronger we were able to live
nobody seemed to have heard about, and infuriating, as often I am told how well I independently again and hopefully made
I did not know anyone else with lupus, so look when I’m having a really grotty day, my parents later years easier.
he encouraged me to do something about and would really like some tender loving
it!! So, after radio broadcasts, and a lot of care and sympathy. I’m sure many of you Martin found our friends and family were
letters a group was started that was can connect with that. all too willing to help and they would
eventually to become LUPUS UK. I have found having a hobby that will often feel hurt if we didn’t ask them, so do
take all the help that is offered.
divert me from my discomfort and worries
This was a lifeline for me. My husband He strongly believes that being able to
Martin and I meet up regularly with the very important in my life. Some
very first lady, Joyce, who responded to advertised regularly are art, pottery, pursue his own interests, whether it was
my radio broadcast for anyone with lupus book clubs, talks, language lessons, bridge, playing tennis, table tennis or golf or just
to contact me and we have become close antiques, and local walks. Anything you going out with his mates made life loads
friends. We are both so grateful to have can take an interest in certainly helps and easier for him. There is a tendency, which
found each other and know that in 1978 also puts you in contact with a different set must be resisted he says, to stop your own
neither of us thought we would see the of people and well away from the medical life, but this diversion means that you both
year 2019, so miracles have occurred in world, which can be overwhelming. stay sane and are more able to face the
both our lives, many miracles due to being I joined a local art group that I find difficulties of an unwell partner.
in the right place at the right time, but also really relaxing despite my being rubbish As I am writing this he is on the golf course
by being knowledgeable ourselves as to at it. I discovered a new art form called and before he left he made me a flask of
what steps to take with our lupus. “Cheryl Art”. As thankfully I am good at coffee and made sure I can navigate our
Coincidentally in the last three weeks we cake making, I take some along for the tea bungalow easily on my crutches. I’m sure
have both gone through hip replacement break and the proper artists now welcome he is enjoying his golf, while I am happy
surgery and our frequent e-mailing, me with open arms! having independence.
comparing notes has helped us both
greatly. And we have also been able to I asked my husband Martin what advice he We do try to live as normal a life as
give each other advice and keep our would give the partner or family of a possible, but accept and understand the
spirits up. We now look forward to lupus sufferer, as I worry very much about inevitable limitations.
meeting up when we can celebrate the toll it must take on him. We moved into a bungalow seven years
ditching our crutches. ago as my mobility was rather limited, and
He started by saying how hard it is living
Starting LUPUS UK played a major part in with someone whose condition is life is so much easier now, but the
my determination to get stronger and it unpredictable and you always have to be downside is having a kitchen so near the
certainly made for a more educated me. prepared for the unexpected. That often bedroom means that I sometimes raid the
I didn’t have time to feel sorry for myself means cancelled restaurants, holidays, fridge in the night! Not so good for the
and meeting other lupus patients was a seeing friends etc etc. Making sure that waist line!
major bonus. There have been thousands the journey for the medical appointments is So I do feel at almost 70 and having had
of patients since 1978 that thankfully do possible, are there steps at the station, if lupus for over 40 years, that I am in a
268C appointment out of
not face the isolation of a strange going by car is the pretty unique position to give my views on
sounding condition, plus, of course, all the rush hour, is there car parking? what sometimes I have felt were

insurmountable problems. My problems not dations, do research about your condition, friend or family member who can help to
only caused by lupus, but also by the and the drugs used. interpret a consultation and fill in the
drugs that were essential to keep me alive inevitable gaps, because patients are
at the time. Are you satisfied that your prognosis could nervous and worried and sometimes just
not be improved?
I’ve had three new knees. I know there are cannot concentrate on what they are being
only two, but one of them decided to pack Make a note of the questions you want told.
up and had to be re-replaced, a new hip, answered during your consultation. Take with you an up to date list of
and a revision of this hip after 27 years, You can help yourself by feeling more in medications and the dosage you take and
and new shoulder, but even more signifi- control and able to also inform your family give the doctor a copy to keep. I also give
cantly, last July I had spinal surgery where of what is expected of you. Of course, the doctor a list of the surgeries I have
a most brilliant surgeon replaced a disc with the plethora of information available had and the dates they took place. This
with a titanium insert held together with on the internet this is easier, although it avoids the dreaded memory test which can
large screws. can also sometimes be quite dangerous. take up most of the consultation.
So I would say use with care.
Prior to this I had been virtually unable to Lupus is such a minefield of various
walk, using a wheelchair and was in Sometimes too much written information symptoms, pain and varying degrees of
continual pain. can be frightening, so I do feel that both, that each patient must be treated as
contacting your local group where you can an individual.
I had seen two surgeons prior to this
surgery who told me that the surgery make lifelong friends and talk with There is no ‘one cure for all’ and the
would be far too risky for them to likeminded people is very beneficial. perseverance of the patient as well as the
undertake and they referred me to pain Our CEO of LUPUS UK, Chris Maker and medical professional is essential.
clinics and a pain psychologist! As you his team, do an amazing job. They make
can imagine this was devastating for us sure that the magazine LUPUS UK News From experience it is very important to
to hear. and Views is published regularly and is regularly keep in touch with your GP. At
our surgery we need to make an
But my husband and I were not accepting full of help and advice. They also appointment three weeks in advance unless
this and Prof Hughes recommended a third organize and run Conferences and Get it is an emergency. I find it is worthwhile
surgeon, who explained what surgery he Togethers, plus the wonderful fundraising booking for three weeks ahead and then
would do and above all, he felt confident for research and education. cancelling it as early as possible if it is not
that it would be successful, and miracu- Their efforts make sure that the lupus needed. However, often it is needed to
lously it was. patient and their family is advised fully, update drugs, have blood pressure taken
Maybe after so many years of serious and feels part of the lupus family and the etc. She welcomes seeing me to keep
illness we have learnt a lot about standing invisible hug that that provides. Self-help abreast of my health and have no shocks
our ground, and not accepting defeat. groups are very important in this time of of flare ups. I have found seeing the same
Some might say that I’m rather stubborn!!!! such busy overstretched doctors and you doctor, if possible, greatly beneficial as
But I suppose just being here today writing do want to be fully informed when facing she knows what is normal for me.
this is a testament to that. your consultant.
As doctors get busier and busier with
I am telling you this story to encourage you For that reason, I believe it is imperative increasing workloads and appointments
not to give up, but do ask for recommen- that the patient is accompanied by a are harder to obtain it is imperative that
we help ourselves more, please join a
support group, join the online community
talk with likeminded people and then you
will feel more positive.
The lupus picture has changed dramat-
ically since I was diagnosed. The drugs
used are so much more effective in
treating you and with far less side effects.
There is always somebody to help you at
The majority of people have now heard of
lupus, but if not please do take the time to
briefly tell them what lupus is.
Let’s never return to those earlier days
that I spoke of when lupus, in the
information available to me in 1978, was
just listed as a fatal disease, and to most
people meant nothing at all.
How different it is now.
I’m able to enjoy a relatively normal life in
my own way and thoroughly enjoying my
children and grandchildren.
A dream come true!


“Let’s Join Together to Fight Lupus”

wOrlD luPus DAY: meeting point for those with a connection to European delegates are looking forward to
The World Lupus Day Observance had its LUPUS EUROPE. LUPUS UK was presentations from leading UK Lupologists.
annual presentation on behalf of the represented by Yvonne and Peter Norton, world lupus Federation:
World Lupus Federation by the LFA in with Trustee, Sammy Ainsworth and Sophie
Washington DC, 10th May. Ainsworth (RAiISE) also present. “vision for lupus” report:
Once again, this special day was marked luPus eurOPe: GSK combined with the World Lupus
Federation to produce the Report, launched
around the world with many national work Groups: 10th May. Many lupus patients worldwide
groups organising events. Examples had responded to the call to complete a
included; lupus Alert, mauritius went ‘live’ The five Work Groups, established 2018,
on radio and held an Information Day: The are working on a number of projects. In some short on-line survey. The Report can be
voice of lupus Foundation, Trinidad & instances, the Groups are being enlarged by found at:
Tobago: President, Reeanna Erani Harrilal new members responding to calls for
was interviewed ‘live’ on TV and radio. The interested/qualified people with lupus. For information on the World Lupus
annual candlelight vigil at Port of Spain website: Federation visit: www.worldlupusfed-
attracted a large crowd with PoP (Put on
Purple) being very visible. The strap line The new website is now up and running and
“There’s US in LUPUS” was also used a vast improvement from the previous Important events on the horizon are:
extensively: sle DK: The Lupus Group of website, visit: ACR Annual Meeting - Atlanta, Georgia,
Denmark launched a new website and held blog:
USA - 8-13 November 2019
several information meetings: The lupus
Foundation of bangladesh: held a WLD The Blog has now migrated to the new LUPUS EUROPE Convention - Liverpool, UK
Convention with a panel of lupus specialists website and can be found at: www.lupus- - 22-25 November 2019
in a beautifully decorated hall: Gruppo 12th European Lupus Meeting/SLEuro
les Young (lupus Italy): The Young Lupus The old LUPUS EUROPE Blog has been Conference - Bruges, Belgium - 25-28
Group organised an on-line collage of deactivated. If you were registered to March 2020
photos to promote #CrepiIlLupus: Lupus receive an e-mail for new posts on the old Yvonne Norton - UK Representative
Cyprus, Hungarian Lupus Group, blog, your address has also been migrated.
Portuguese Lupus Group: All held
information events with lupus specialists webinar: EULAR - European League against
speaking. The first webinar was used 5th March. This Rheumatism
Most member countries of LUPUS EUROPE, was a catch-up session to help reduce the ACR - American College of
along with other World Lupus Groups, gap between Annual LUPUS EUROPE
organised Awareness/Information events on Conventions and keep members in touch LFA - Lupus Foundation of America
or around 10th May. Almost all were with events taking place. GSK - GlaxoSmithKline
prolific on Facebook/Twitter. The next webinar planned for 5th
The World Lupus Day website: September 2019 will be a "General was updated information and interaction webinar".
with international news. All are welcome to participate; it is
necessary to have ZOOM installed on the
eulAr 2019: device being used.
This year Eular was held at Feria de
Madrid, 12-15 June, with in excess of Convention 2019:
14,000 delegates. As usual, LUPUS The Lupus Europe Convention will take
EUROPE had an information booth in the place in Liverpool, 22-25 November when
Eular Village which was also used as a the theme will be “Education to Empower”.

Join the LUPUS UK Online Forum The forum is home to a very friendly and

supportive community which actively welcomes
LUPUS UK continues to hosts an online new members and provides helpful responses
community forum with HealthUnlocked to people’s questions. Members enjoy being able to share their experiences and questions
HealthUnlocked is a social network for health. anonymously (something that is more difficult
It allows you to find others with similar health on Facebook), with people who understand
backgrounds to help you take on day-to-day what they are going through. Many members
health concerns together. The LUPUS UK have commented on how it is really reassuring
community has now been running for over to be able to talk to people going through
five years and is host to thousands of 268C the same experiences; it leaves them feeling
members who are affected by lupus. a lot less alone.


30 Years ago, on may 26, 1989, luPus many projects established by ELEF/LUPUS medics dedicated to easing the debilitating
eurOPe’s Constitution (then under the EUROPE, with the two major ones, from my effects of lupus so enabling their patients
name of eleF) was signed. As the 30th point of view, being The Common Cause to live happier and more comfortable lives.
Anniversary is celebrated, former luPus and Unmasking Lupus. However, the greatest joy has come from
uK representative to eleF and Chair of Both of these projects brought member meeting many, many people who live day-
luPus eurOPe, Yvonne Norton reflects... by-day with lupus (in all its forms), who
countries together in two unique ways, one
26th May 1989, certainly a date to investigating the major problems caused by smile and put on a cheerful exterior (while
remember – the birth of ELEF – European lupus as experienced by patients and the silently screaming with the pain they are
Lupus Erythematosus Federation with the other demonstrating the effects of lupus feeling) to help others cope with their lupus
motto “Uniting People with Lupus throughout depicted through art, such as painting, and know they are not alone, whether they
Europe”. poetry, story-telling and photography. are in the same village, the same town or
September 2008, during the Convention in “Uniting People with Lupus throughout the same country…
Palma de Mallorca when I was elected Europe”. Today, 30 years later, LUPUS EUROPE is
Chair, Council agreed to a name-change – With Peter, my husband and former still “Uniting People with Lupus throughout
ELEF became LUPUS EUROPE. The motto Treasurer of ELEF/LUPUS EUROPE, I have Europe”.
remained “Uniting People with Lupus had the opportunity to travel throughout Yvonne Norton
throughout Europe”. Europe to attend many conventions and Chair 2008 - 2012
Over the years, I have been involved in conferences and the honour of meeting


It was with deep sadness that, during May, such as EULAR, established the LUPUS UK application which gave RNHRD the award
I heard the news of the death of Sister Sue Nurses network, contributed to the range of of LUPUS UK Centre of Excellence. Her
Brown MBE, Nurse Consultant in tremendous knowledge of lupus and its
Connective Tissue Diseases at the Royal allied illnesses, along with her empathy
National Hospital for Rheumatic Diseases, with patients and her teaching skills
Bath (RNHRD,The Mins). combined to give Sue respect from
everyone who came in contact with her.
I knew Sue for many years. Also a West
Midlands Girl, coming from Walsall, not Being awarded the MBE for Services to
far from my home, we would both lapse Nursing in the Queen’s Birthday Honours,
into the Black Country dialect when we 2017, was official recognition of Sue’s
met up. I remember one occasion when we dedication to her work.
were sitting together at a post-conference All who knew Sue, whether as a friend,
dinner in Madrid when a delegate from colleague or nurse, will remember her with
The Netherlands asked why we were affection and with gratitude for the role she
speaking a foreign language when we played in providing education, support and
were both from the UK! care for people with lupus. Thank you, Sue.
LUPUS UK Factsheets and booklets and, not
Sue was very well-known within the Lupus long before she had to take early medical Yvonne Norton
World, she spoke at major conferences retirement, she headed the successful Vice-Chair & Trustee

TRAVEL INSURANCE We receive a number of calls at National Office from
members who are having difficulty finding holiday insurance.
We hope the following will assist:
Freedom Travel* 01223 454290 Go Travel Insurance Services 0870 152 5840 Staysure  0800 054 2226
Orbis Services  0845 338 1638 Club Direct Travel Insurance 0800 083 2466 World First Travel Insurance 0345 90 80161
AllClear Insurance Services 0845 250 5250 It’s So Easy Travel Insurance 0844 357 1315 The Insurance Surgery* 0800 083 2829
Insurance Choice* 0843 22 78183 Free Spirit Travel Insurance 0845 230 5000 JustTravelcover* 0800 231 5532
Able2Travel  0845 839 9345 Saga Travel Insurance 0800 015 8055
Please bear in mind the above companies may not always be able to offer travel insurance.
This will depend on the answers given when medical screening is undertaken.
*These companies offer a donation to LUPUS UK when a policy is taken - When enquiring please quote LUPUS UK

Important Dates 2019/20

TrusTees’ meeTING luPus uK lONDON luPus uK AGm
25th October luPus INFOrmATION DAY 16th May 2020
Leonardo Royal Hotel London City 5th October Village Manchester Hyde Hotel
Hilton London Tower Bridge Hotel
26th October INFOrmATION DAY
Leonardo Royal Hotel London City 16th May 2020
Village Manchester Hyde Hotel

So you’ve got lupus

Don't miss our DvD and accompanying booklet for the Newly Diagnosed
Patient, their Family and Friends, available from National Office at just £1
to cover postage and packing.
Please send a cheque, payable to LUPUS UK, to National Office together
with your name and address and we'll be pleased to send a copy to you.
Only one copy per household please. Alternatively, order your copy from
our online shop. Medical professionals can call 01708 731251 to order a
supply for their patients.

Disabled Facilities Grant BEWARE -

Did you know you can apply to your local council use of antibiotics containing sulfa
for a disabled facilities grant if you live in
England or Wales. The grant helps you adapt your Information contained in The Lupus Enyclopedia:
home to make it suitable for a disabled person.
People who have SLE need to
You could get a grant remember that they should always
from your council if you’re list sulfa antibiotics as one of their
disabled and need to allergies, even if they have never
make changes to your taken them before. Sulfa antibiotics
home, for example to: - such as Septra, Bactrim,
• widen doors and Gantrisin, and sulfadiazine - can
install ramps cause lupus to flare, and people
• improve access to who have lupus have a high
rooms and facilities - chance of being
eg stairlifts or a allergic to
downstairs bathroom them as well.
• provide a heating system suitable for your needs
• adapt heating or lighting controls to make them
easier to use
A Disabled Facilities Grant will not affect any
benefits that you’re getting.
Find out more at
Details of how to apply if you live in Northern
Ireland can be found at
/disabled_facilities_grant 268C


Lupus, the Flowers, the Dog and the Book

Last summer, I wrote an article on how changing our negative emotional state
can improve both our life and our health. In order to do that, I explained how
the 38 Bach Flower Remedies, discovered by Dr Bach in the 1930s, can

alleviate all of the negative human emotions and restore inner peace. The
remedies come from bushes, trees, wild plants and flowers. So, in essence, they
are healing liquid plants and can be used alongside conventional treatments.

Since last summer, I unwavering and unconditional love for me, losing my job or suffering from nasty side
have continued to have pushed me out of bed so many times effects of the medication etc. I found that
pay attention to because I could not let him down by not making a conscious effort to look back on
my state of mind taking him out for his two daily walks. all the positives and on my achievements
and the impact Of course there were days when I was go a long way towards lessening the hold
negative emotions truly so unwell that I could not look after of Lupus on my body and on my life.
have on my him but, through meeting other dog For example, six months before I was
physical health. I owners, and some diagnosed, at age 56, I started a one-
would confess that good friends, I year top up university course to get a
there were ups and discovered a degree. Halfway through, I fell quite ill
downs, physically and emotionally just as whole array of and was told I had lupus. Not being
you experience, I am sure. However, once people willing to aware of the limitations that full blown
again, the Bach Flower Remedies played a help out and I lupus would bring, it did not occur to me I
valuable role with their soothing powers.
only ask when I may not be able to
In addition to using various remedies, my am really, really, finish the academic
dog Teddy (and a growing number of desperate. I year. But I was
people around me who suddenly materi- have pushed determined, so I
alised since myself more in pressed on. At the
owning a dog) these last 18 time, even though I
have greatly months than in the was also working, I
improved my six years since my diagnosis. Each time I felt no limitation
emotional health. push myself and go out walking Teddy in because, in my
The isolation I all weathers, I come back home feeling mind, I was 100%
used to feel, better in myself and feeling a sense of committed to finishing the degree.
caused by the achievement I rarely felt before.
chronic fatigue, More recently, in January 2019, I
nearly Plus, in all honesty, speaking to friends published my first novella. I never thought
disappeared who also turned 60, highlighted that they I had it in me to write a creative crime
when Teddy too were suffering from the same emotions drama, but I did. The best part is that,
entered my life. He was a surprise and issues that I was: depression, tiredness, whilst writing, I felt totally alive and not at
present for my 60th birthday in November irritability and apathy. It seems obvious all “lupussy”. The health benefits of
2017, and initially I thought I would be that some issues are age-related but, when finding an activity that makes me smile
unable to cope with the demands of a nine one’s life is marred by a long-term illness, and happy are amazing. It is definitely
week old puppy especially never having it is easy to lose track of the fact that another tool in helping reclaim my life
had a dog before! I was exhausted a lot, different stages of life bring their own from the disease.
I cried a lot, I often questioned my level of challenges anyway. To most people, the concept of flower
competence as a dog owner. Initially, I put So now I ask myself more frequently: “Ok, essences being instrumental in improving
all these doubts and problems down to you are feeling this today. Is this lupus or one’s well-being and life may be far-
having lupus and to low energy levels. is it the normal process of reaching 60? fetched. However, altogether, the Bach
This was until I spoke to other owners of How can you deal with this differently?” Flower Remedies, the dog, and the book
puppies, non-lupus sufferers, who were If I can push past it, I know I was limiting have helped me switch my perception of
struggling in the same way that I was! myself. But if I really physically can’t do it the disease and get on a path where I
then I know that, on that day, rest is have more control over my health and
The reason I mention this, is that it needed and I may have to ask for help. over my life.
highlighted my tendency to blame The valuable lesson from this new
everything on lupus and Sjögrens when, in approach is that by paying attention to, This last year, I reclaimed “ME”! “ME”
fact, there are some moments in life when and challenging, my negative state of happens to have lupus but “LUPUS” NO
everyone struggles with certain situations. mind and ensuing emotions, it lessens the LONGER DEFINES ME.
What Teddy brought me is a sense of impact of lupus on my body.
balance and perspective on the disease.
It pulled me out of the pattern of Reflecting on what I had achieved so far in Article written by Régine Demuynck of
believing that I was so limited that I limited my life (post diagnosis), also helped me The Butterfly Within
myself even further. Before Teddy, when I put this disease into perspective. In the Please note that people with diagnosed
felt I could not get out of bed, I would not last six years, I have achieved quite a bit. mental health issues should not use Bach
get out of bed. Since Teddy, my Of course, it did not always feel that way Flower Remedies as they can interfere with
commitment and love for him and his when I was facing daily struggles, when mood-altering medication.

Regional Reports

If you haven’t received information about meetings or events from your regional Group, where there is one in place, please contact
them (or luPus uK National Office if you don’t have contact details) to be placed on the mailing list. If you are not currently a
member of luPus uK, your regional Group now requires your consent to contact you due to changes in data protection laws.

Devon and Cornwall

It’s been quite a busy new committee member. After lunch we had day! That would
few months since our three speakers. Dr Susannah Earl (Exeter) have been a great
last report. Our usual spoke on ‘Fibromyalgia, Raynauds and shame on what
eight C&Cs around the Lupus’ and as many members have these was an outstanding
counties were held in conditions, her talk proved of great success. Around
march, may and July. interest. Dr Claire Ryan (Totnes) spoke on 100 people came
events like bank ‘Chiropractic’ and set out how it can have together to listen
Holidays, AGms and school holidays great benefit to many, including those with to our four
lead to occasional re-scheduling and this lupus, while Marie Oxley (Totnes) excellent speakers.
year our ‘may’ Cornwall gatherings were introduced members to the world of
held on 1st June - but they were held! Ayurvedic medicine. As always, there never After an official opening by Patron Alison
seems enough time and all the speakers Raynsford, former Plymouth MP, we listened
In March we held our AGM in Dartington, were very well received. During the breaks
welcoming Niki Solomon as our new Vice- at lunch and in the afternoon, Dr Ryan and
Chair and Anne Corrigan (Cornwall) as a
colleague Hannah Green offered free
posture/spinal checks and subsequently
several members have begun attending
OLA, Dr Ryan’s clinic in Totnes.
The major event was when we hosted the
LUPUS UK Devon & Cornwall Information
Day on 18th May. This was held at the very
pleasant Devon Hotel in Exeter. Several
members stayed overnight on Friday
and/or Saturday. The Saturday night was to our two other patrons. Dr Christopher
somewhat marred by an electrical failure Gardner-Thorpe (Exeter) spoke of ‘The
for two hours in the evening! We were so Doctor’s Dilemma’ while Dr David
pleased it hadn’t happened earlier in the Hutchinson (Truro) had the intriguing title
‘Tales from the bedside and clinic room -
mere anecdotes or the foundation for a
great understanding of disease


pathogenesis?’ After her success in March, Sunday. Elvin is a close friend of one of our but still with a replica of Excalibur!) we
we had managed to get Dr Claire Ryan to members so presented us with a cheque for were presented with a cheque for £2,405.
forgo going to a friend’s wedding in Bristol, £700 from their efforts! On top of this, our This had been raised by Masonic Lodge St
to talk about ‘A chiropractor’s perspective lovely raffle table brought in over £400; Anne’s 970 in Looe, of which DCLG
on health.’ thanks to all who donated prizes and member Geoff Bowyer had been President
bought tickets. At the end of the day a lot and who had had DCLG as one of his
Our final speaker needed little introduction.
Professor Graham Hughes’ reputation as of happy faces made their way home! We charities for the year. Thank you Geoff and
were delighted to receive on the day and wife Steph for the tremendous amount of
subsequently many words of appreciation work you put in. Just two weeks later we
for the time and effort put in by ‘the team,’ headed for Plymouth to pick up a further
particularly Secretary Mayne who had cheque, this time from Devon Masons and a
spent many hours preparing and then further £1,250 was added to our account
setting up the raffle and sales tables and (bringing another smile to our Treasurer’s
also the signing-in table (fudge included!) face!). Nicole, friend of a DCLG member,
‘The best we have attended’ and ‘you’ve ran the Plymouth half-marathon in May to
set the bar very high!’ were comments raise funds for LUPUS UK and a ‘Come
repeated numerous times. Hard work but Dine with me’ event in June organised by
one of the world’s leading experts on lupus well worth it all. Vice-Chair Niki Solomon will be reported
preceded him and ensured rapt attention on in the next issue, as will other fund-raising.
for his talk ‘Sticky blood and the lupus An outstanding few months, with thanks to
epidemic.’ Such was the depth and detail the committee, our members and supporters
of their talks that no summary would do for all that has been done. We were
them justice. However, the talks are delighted to have Yvonne and Peter Norton
available on the LUPUS UK website and in Exeter (we’ve been trying for years!), the
they are well worth viewing!
Trustees and so many old and new friends.
On arrival, everyone was presented with a We welcome anyone visiting our lovely
gift from DCLG - some hand-made Devon area over the summer to check our website
fudge! We also had some lovely home- and see if there are any activities while
made cup cakes, donated by Di West from The following day, Chair David and you are down here - we’d love to say hello!
Wales. London member Elvin Sampson and Secretary Mayne headed west, to the
two friends from his synagogue had ‘gone beautiful Cornish village of Tintagel. In Enjoy the summer - but watch out for that sun!
the extra mile’ in London the previous King Arthur’s Great Hall (not the original David Hopkins

North West

we’ve had a busy couple committee members bake a variety of cakes Our Coffee and Chat groups around the
of months here in the that went down very well. We raised a region continue. Most of our groups
North west. In January, grand total of £100.30. We also had lots continue to flourish; some have been less
eight members took part of opportunity to talk with patients and well attended recently, but we will
in a focus group with staff, raising awareness of lupus. We have persevere and hopefully drum up some
modus Outcomes, where they discussed also been to Alder Hey Children’s Hospital renewed support. We receive requests for
the development of a new questionnaire with our awareness stand. Our loyal support via our website and we also have
for people with lupus, focusing on member, Kath Dempster, who runs our an active Facebook group that continues to
fatigue. Lancaster coffee and chat group, held a get new members and is very well used.
In April, we held our AGM and coffee day on the 10th May, raising an However you spend your summer, we wish
Information Day in Garstang. We had amazing £500. Stockport based choir, Rock you well.
very interesting talks from Dr Marwan Up 2 Sing, (pictured) had a fundraising Elaine Holland
Bukhari from University Hospitals of concert, raising a fantastic £400.
Morecambe Bay trust about the BSR
Guidelines for managing Lupus and from
Irene Lewis, an occupational therapist from
Lancashire Care’s Moving Well Service
about occupational therapy for people
with lupus. We also had Kathy Gulson
and Nicola Feeney from Community
Pharmacy Lancashire talk to us about the
role that community pharmacies and their
teams play within the local neighbourhood
and the services that they offer.
At the AGM, the current committee
members were re-elected to stand for
another year, and two potential new
members expressed an interest.
For World Lupus Day, we held a bake sale
at Manchester Royal Infirmary. Several 268C


South & East Scotland

I am busy writing this The next Perth meeting will take place on just amazing. Katy and Paul crossed the
after having had a Saturday 11th August from 10.30 am so finishing line in 4 hours 29 minutes.
rollercoaster of a few please come along if you can. For those of Lou Ella Cole from Stanley, Perth organised
months as my poor you not on Facebook and who would be the Perth Active Charity Races at the North
mother has been in interested to attend in the future, then Inch in Perth, with baking/sweets, tombola
and out of hospital on please contact Evander direct via email and a Lupus Information stand on 21st April
five occasions. she is palliative with her [email protected] or his phone
IPF but now also has a severe heart number is 07818 189120 for more
condition in addition so as I am her carer, information.
I’m afraid I’ve had to push back on some Fife - The last Quarterly Coffee and Chat
of my lupus commitments due to in St Andrews was held in July 2017.
spending more time on the west coast of Several visitors to our WLD stand at the Vic
were keen to attend if it was ideally held
Coffee and Chats in Kirkcaldy so please get in touch with me
Our Dundee first meeting of the New Year if you would be interested in organising
was held on Saturday 16th March 2019 at and hosting this meeting.
lupus Awareness month - October
2019 with 5k,10k or 15k runs. There were
Advance warning that I have dates booked medals and goodie bags for finishers and
for LAM Awareness stands in the main all entry money went to LUPUS UK. This
concourse of Ninewells Hospital in Dundee so raised approximately £755. She also
will be looking for local volunteers to help organised various fundraising raffles to help
man the stand on Tuesday 1st October and hit her Marathon pledge. Lou Ella then
Tuesday 15th October to run in line with SLE successfully completed the London Marathon
Clinics from 12.30-16.30 hours. I’ve asked in a time of 4 hours 20 minutes and raised
Sarah Heney to see if she can organise an over £1,300 excluding gift aid with
10am at the McManus Gallery Cafe. There awareness stand over in at least one of the additional offline funds nearly at £400.
were 11 of us who braved the snow/sleet Edinburgh Hospitals as we’ve not been Future planned Fundraiser events
to get together. The next meeting is on 14th visible there since October 2015.
September 2019. John Scott, partner of Amy Kearns from
Our local london marathon near Kirkcaldy ran the Edinburgh Half
edinburgh - Sarah Heney held her second runners Fundraising for luPus uK Marathon on Sunday 26th May. It was
afternoon meeting of the Edinburgh coffee Sarah Heney held an incredible Afternoon originally going to be Amy running but
and chat at a new venue called The Place, Tea at her home on 7th April to help raise thanks to lupus she wasn't able to train for
on York Place, Edinburgh on Saturday 23rd and boost funds several months and then she found out she
March with nine people attending. for her was pregnant with their first child. They are
Please contact Sarah Heney, the meeting stepdaughter hoping to raise £300 so if you would like
host on [email protected] or 07717 Katy Wakefield to donate here are the Just giving page
205465 for details of the next meeting if and son in law details:-
you are not on Facebook. Paul Wakefield
who ran the
east lothian - We are still seeking a new London Marathon ohnscottsmarathon
host for this area. If you are reading this on 28th April Another of our members, Elizabeth Fraser
and would be interested in hosting then 2019 for LUPUS from Cowdenbeath held a Craft sale in
please get in touch with me. UK. Katy is late May with her fellow local Kelty
Perth - As reported in the Spring edition, pictured with Loving Hands Craft Group members in the
Evander von Weygand successfully helper Paul Kelty Community Centre to fundraise for
relaunched the Perth Lupus Group meeting Johnson. Sarah LUPUS UK.
on Saturday 11th May 2019. This was held invited her many friends and family who In other news, I have also been busy
at 10.30am in the Perth Concert Hall, kindly raised the grand total of £740. supporting the new replacement CTD Nurse,
Cakes and baking, raffles, charity car
washing and a passionate speech from Pamela Paton in her role at Aberdeen
Sarah boosted the funds. Royal Infirmary, NHS Grampian who works
Tuesdays and Wednesdays.
Sarah and her husband Stewart were then
down at the I have also been further assisting Dr Mohini
LUPUS UK Gray, Rheumatology Consultant at Western
Cheering Point General Hospital, Edinburgh by providing
on the her with feedback on her latest project
Marathon day. which is developing a user- friendly
Over £4,500 website for patients. When a drug change
has been happens, it is usual for Consultants to give
Glasshouse Café and some of our regular raised the patient a helpful drug leaflet but as
members who usually attend the Dundee 268C excluding Gift more people tend to look to the internet
group came as they live closer to Perth. Aid which is for information, she hopes this will be an

additional information source. She is She fought a brave but tough battle with and a very fitting send off on World Lupus
preparing videos on the various her incurable cancer, just diagnosed last Day at the Golden Loch Fishery near
medications prescribed to treat SLE and summer, on top of her lupus. She was a Auchtermuchty.
wanted my feedback on her initial lovely lady, a good friend to me and a The South and East Scotland Lupus Group
Hydroxychloroquine video. keen LUPUS UK supporter as a long-
standing member of our group who will be send best wishes to all members and friends
And finally, it is with great sadness that on sadly missed by all who knew her. I was of LUPUS UK for a lovely and healthy
1st April 2019, one of our members, Pixie invited to attend her private memorial summer.
Coll, from Auchtermuchty passed away. service on 10th May which was a privilege Elaine Stewart

West Midlands

world lupus Day was future. Volunteers to set up Coffee & Chat Due to injury, two members of WMLG
given an extra push in in other areas of WMLG will be very Golden Bond Team had to drop out of
the west midlands with welcome. Virgin Money London Marathon 2019
posters being Re-locating the monthly Lupus Drop-In to after the closing date for registration had
displayed throughout intu Merry Hill Shopping Centre, Brierley passed so it was not possible to enter
the area in hospitals, medical centres, Hill, has, so far, not brought the surge of replacement Runners. However, the places
churches, libraries etc. rashmika and attendees that had been hoped for, will be carried over to next year when
Kettan Daji set up a display of lupus however, the regular members enjoy the WMLG will have places for 12 Runners in
literature in the entrance to sainsbury’s sessions and, when a Speaker is booked, VMLM 2020. All ten 2019 Team members
marshall lake store, shirley, solihull, there are usually more people present. completed the Race on Sunday, 28th April,
and spent the day speaking to people in times ranging from 03:17:57 to
about lupus, they also had £30 dropped The Lupus Specialist Nurse at University 06:29:54 - a fantastic result. Sponsorship
into their collecting box. Jenny mynett Hospital, Coventry (part-funded by LUPUS money is still coming in. If you, or someone
set up a display and hosted her annual UK), Kirstie James, has decided to leave you know, is interested in taking part in
wlD Coffee morning during the lupus the post after just ten months. We are, the 2020 VMLM on behalf of
Clinic at City Hospital, birmingham, obviously, disappointed by this news and WMLG/LUPUS UK please make contact
which raised a lovely £131. very much hope that it won’t be too long with Yvonne Norton.
Following the support of Sainsbury’s staff, before the hospital has another Lupus The website:
Rashmika and Kettan have established a Nurse to assist with the care and and
monthly Coffee & Chat in the store café. treatment of people with lupus in Facebook: West Midlands Lupus Group
Beginning at 7.00 pm as the café is Coventry. are regularly updated with news and
closing, the whole area can be used, if Although there have not been many fund information of events and actions taking
necessary, without any disturbance from raising events over the past few months, place within the large area covered by
customers. The hot water urn is also those that have taken place have been WMLG. We do not have a forum on fb,
available so own drinks can be made. So, very worthwhile. Iris Downey and her referring to Health Unlocked.
if you are in the Birmingham area (or family have continued their Table Top
elsewhere) the first Tuesday of the month Sales, adding a further £600 to WMLG 2019 is racing by and the calendar is
at 7.00 pm Sainsbury’s Marshall Lake bank account. Julie and Jessica Evans telling us it is already Summer, a timely
store is the place to be. organised a Craft Fair at Holmer Parish reminder that the use of a higher SPF
Sunblock may be necessary.
Jackie Evans organised a lunch-time get- Church which raised £406. Following this
together in the restaurant at Wyevale success, Julie and Jessica plan to have The West Midlands Lupus Group sends
Garden Centre, Hereford, when she was another Craft Fair later in the year. best wishes to everyone for a happy and
joined by Carrye and Richard (previous Memorium donations have also been healthy time whilst taking care in the sun.
Chair of Devon & Cornwall Group, now received and, as ever, we are grateful to Yvonne Norton
living in Hereford). Disappointingly, no the Families who kindly make donations in
other members attended. If others make memory of loved ones when they are
contact, Jackie may try again in the near going through such sad times.

Rashmika and Kettan Daji at Sainsbury’s Birmingham Coffee & Chat Jenny Mynett and colleague WLD Coffee
Marshall Lake Store WLD information table 268C Morning


North Wales

where does the time We held our AGM in Davies from a cake sale, and a fabulous
go? The summer is the Peter Maddison £450 from one of our very long term and
upon us and our year Rheumatology Centre stalwart members, Mr Meirion Morgan of
so far for the North on 12 May, voted in Caerwys. We also learned that Mr
wales Group has been the existing committee Morgan has recently received a Rural
steadily productive with our Group for another year, with Hero award for over 65 years of service.
already able to present a cheque for the addition of a new This is a prestigious award that is only
£2500 to luPus uK at the National member without awarded at the judges’ discretion. Mr
AGm in exeter in may. Our added portfolio in Erica Roberts and talked Morgan is a second-generation butcher
bonus too, is that Dr Yasmeen Ahmad through some interesting and exciting new and now runs the meat counter at
eventually stayed in North wales and ideas for the Group’s activities. We then Morgans Pori Gwych,
remains a full and loyal supporter of had a short presentation on the benefits which was named in
our Group and its activities. of Tropic products and the skin from his honour; he now
Charlotte, and then Diane provided us works there part-time,
with a presentation on Reflexology, its and on winning this
benefits, and award has been
answered the many nicknamed by his
questions from local community
members. This was “Super Meirion” - something our Group
of course all helped will adopt! Of course, we are very proud
along with and delighted for him, and add our
afternoon tea! sincere congratulations.
We also received I think that’s all for now, enjoy the rest of
several generous donations from our the summer…
members including £215 from Rachel Karen Newby

Northern Ireland 

The Northern Ireland Boyd ran 61 miles in 30 days in a Fun Run Joanna for organising the event. Marshall
lupus Group has raising £1,200 for the Northern Ireland is pictured below addressing the audience.
enjoyed a positive start Lupus Group. Claire's two sons, Ollie and
to 2019. Isaac, supported her for the final two miles
At our March group of the run. Many thanks to Claire and her
meeting, Kerry Tinman, two running mates (pictured l-r Isaac, Claire
School Nurse/Counsellor, gave an and Ollie)!
interesting and very well received talk on Earlier this year, Gillian McLaughlin, Arlene
mindfulness. Our AGM was held in May Wasson and Pearl Rankin, in conjunction
with John McCormack, representing Versus with their church, raised £770 and £200
Arthritis, as guest speaker. John gave an for the Northern Ireland Lupus Group.
informative presentation on the service that The group very much appreciate these Group member,
Versus Arthritis provides and offered to Jennifer Kinnon Brown,
engage with our charity going forward. with the support of
The feedback from the AGM was very her employer, Abbey
positive and, once again, we owe a debt Insurance Brokers,
of gratitude to the Whiteabbey Methodist organised a Non-
Church for the use of their church hall. The Uniform Day to raise funds for the Northern
N.I. Lupus Committee would encourage Ireland Lupus Group. The Committee would
members, their friends and families to like to thank all involved.
attend the AGM and group meetings as
these gatherings Finally, the Northern Ireland Lupus Group
are not only would like to pay tribute to Rae Gourley,
informative and one of the founding members of our Group
supportive, but also donations and all the effort involved! who sadly passed away recently. For many
very enjoyable! Marshall Lindsay, Northern Ireland Lupus years, as Secretary of the Group, Rae was
Group Treasurer, is pictured receiving one at the very heart of our charity supporting
Our group has good of the donations (l-r Marshall Lindsay, Pearl people with lupus in Northern Ireland. It is
news to report on Rankin, Gillian McLoughlin, Arlene Wasson). not only Rae's friends in the Committee who
the financial front will miss and remember her but also many
thanks to the hard Marshall, also gave a presentation on lupus people affected by lupus in Northern
work of our at a Coffee Morning organised by Joanna Ireland. Rae will always remain a part of
members and their Jurek at the University of Ulster, Coleraine. our Group.
families and friends. The Coffee Morning was held to raise
In the spring, Claire awareness of lupus. Many thanks to Moya Heatley

North East

we continue to have a able to provide updated information over meeting 18th may, 2019 at The bay
good turnout at our tri- the last few months and shared knowledge Horse, whickham
monthly meetings. Our in relation to current drugs, usage, side We had another good turnout at
current venues in effects and advice from lupus trained staff.” Whickham. Once again we must say a big
whickham and thank you to Dionne for her hospitality.
Gisborough Hall which we alternate A wonderful gesture! Judith Sutherland was unable to attend as
between are ideal for fair travelling We received a lovely email from member she is currently struggling with her health.
distances but we are always keen to hear Vicki Hawksby-Robinson who wanted to tell We wish Judith well and hope to see her in
of other locations. Parking and disability us about her amazing Auntie. Vicki wrote August. Susie Broughton brought along the
access are the main factors required and the following... books written by her Father who will be
a quiet ground floor room- free of charge giving all proceeds to LUPUS UK. Let's
would be considered. Please email me if "My Auntie Brenda celebrated her 80th support this great gesture and purchase the
you know of any venues that could offer birthday on 6th March 2019. Instead of books from Amazon - Red Week and Black
this to our group. Hole, both crime thrillers by Frank
Thank you Flass vale Tractor Club Broughton.
A Tractor run organised by the Flass Vale We discussed the use of Cannabis Oil (The
Vintage Tractor Club in Durham has raised legal type!) which can be purchased over
a fantastic amount of £2,726 for LUPUS the counter. Val stated she had really
UK. The run set off from Ushaw College benefited from using the oil and strongly
then took in Knitsley Hall, Satley and recommends trying it. Almost immediately
Butsfield with many off road sections she was able to walk and move more
courtesy of local farmers and landowners. freely and no longer relies on a walking
The procession which included 75 entrants stick. The exciting breakthrough in Australia
stopped for lunch at Hall Hill Farm before presents she made a lovely gesture of was mentioned with the possible discovery
setting off for the return journey to Ushaw asking for donations to LUPUS UK. Family of genetic mutations which can lead to
College where a and friends gave generously and she has Lupus. Shane kindly provided a dietary
hog roast was collected £312 altogether. My Auntie did advice slip for everybody which she
waiting. There this because I have lupus SLE, as well as produced from reading a book on Arthritis.
was also a other health conditions. I have been very ill Linda brought her handmade goodies with
fundraising raffle since 2008 and it was in 2015 that I was all proceeds going to LUPUS UK.
and Tombola. diagnosed with lupus. Finally knowing what
the cause of my problems was and then A concerning topic covered was members
Every year the getting the correct treatment has led to feeling like they had to be responsible for
run raises money huge improvements in my health, so much so their medication and what tablets could be
for local charities but this year, because a that in November 2018 I gave birth to a taken with what! Whilst everybody agreed
family member of one of the entrants has healthy baby, Sumaya (pictured here with that we are ultimately responsible for
lupus they decided to raise money for my auntie and me). Being a member of ourselves there were several stories of
LUPUS UK. Lucy Stephenson, daughter of LUPUS UK and receiving the support they members being told months after being
club member Dickie Armstrong has lupus offer with information and the lupus nurses, prescribed a drug that they shouldn't have
and was thrilled the club supported a as well as meetups when I'm well enough to been taking it with others. It was a
charity close to her heart. attend, has been a great comfort to reminder that we should always check and
understand my condition and meet others ASK if in doubt.
Gisborough Hall meeting
suffering with similar issues. I'd just like to Thank you to all those who continue to
Member Kevin Rooney kindly provided an send the biggest thank you to my auntie for support the North East Group. Enjoy the
update from the meeting in February. showing such loving support". summer months and cover up!
“On a beautiful sunny but rather windy day Thank you Auntie Brenda from all at LUPUS Sally College
it was great to see nine existing members UK and congratulations to Vicki on the
and one new member together with three arrival of Daughter Sumaya.
supporting family members in the elegant
drawing room. Our new member Caroline
gave us all the full story of how she has
gone from being a very active individual
enjoying her spare time with horses and
planning her wedding to being diagnosed
with lupus in December 2018. She was
married in mid 2018 and the onset of lupus
symptoms starting to impact on both her
social and work life. Following a period of
hospitalisation she was very quickly
diagnosed and she spoke in high regards
of her treatment by the consultant and
hospital staff. Many in the room were able
through their own experience to provide
both information and support to Caroline.
The existing members in the room were all 268C


East Midlands

world lupus Day in World Tai Chi Day in Nottingham arranging it. Two members attended the
may was a big organised by Fibromyalgia UK. We met event and expressed a wish to form a
success. we had a with other associated groups, sharing Lincoln local support group, do please let
stand at the Treatment experiences. It was a most enjoyable day me know if you'd like to proceed with this,
Centre, university and the form of tai chi is especially we would love to get this going for our
Hospital, Nottingham and we received designed for people who may have some Lincolnshire members.
mobility issues. Classes are held at the
Treatment Centre, Nottingham and Hadhari Project
Rushcliffe Country Park Ruddington I gave a Lupus Talk at the Hadhari Centre
Nottingham. Do give it a try or contact me Derby on 25th June.
for more information.
Group meet ups
Events can creep into the diary when it is
too late to inform members via LUPUS UK The following are provisional dates,
News and Views, so please keep an eye please check on Facebook before coming
on our Facebook page for forthcoming
events. Nottinghamshire
many enquiries from visitors. Thank you Coffee and Chat, Saturday 3rd August
to Karen and rosie for helping out on Outlaw Half Triathlon at Lakeside Art Gallery NG7 2RD from
the day, and it was good to meet up 10.00 to 12.30. We meet in a room
with 'old' friends sylvia and Alan. Member Karen Moore's partner Martin
Simms raised a fantastic £1,155 for adjacent to reception, look out for the
world Tai Chi Day 2019 LUPUS UK by doing his first ever Outlaw signs. Family and friends welcome too.
We had a lupus information stand at the half triathlon at Holme Pierrepont leicestershire
Nottingham. This involved a 1.2 mile swim,
a 56 mile bike ride and a 13.1 mile run. Lupus Lunch held at Sainsbury's Cafe,
PHEW! Well done Martin and thank you! Leicester LE4 7SJ meeting at 12 noon on
27th July, 28th September and 30th
skellingthorpe lincolnshire November
methodist Church Hall
I hope to see many of you at one of our
Lupus was chosen as a beneficiary of a events, meanwhile, take care in the sun!
coffee morning and raised £156.87.
Many thanks for this, and to Jennifer for Gill Woodford


we have had three March also saw Wendy and some members Positive times! We will keep you posted.
guest speakers at our of the group, along with Kevin Weston, We are always trying to reach out to
meetings this year, an Chair of LUPUS UK, attend the Welsh people in Pembrokeshire and beyond. We
Osteopath, an Assembly Government Buildings in Cardiff now have members from all corners of the
Acupuncturist and a to meet with the Deputy Medical Officer Hywel Dda UHB catchment area. We
Personal Trainer who for Wales and some of his team. This welcome members with Lupus or other rare
has a master’s in strength and meeting was a positive start and will auto-immune diseases, plus the overlapping
Conditioning. This has been so hopefully lead to more open conversations Scleroderma, Myositis, APS, MCTD, UCTD,
interesting and added a new dimension with the Welsh Government about Vasculitis, Sjogren’s etc.
to our meetings. so, a big thank you to improving lupus care for patients
those who have attended, giving their throughout Wales, but please keep signing All are welcome to join us, family and
time for free. and sharing our petition if you haven’t friends too, if you wish to bring someone
This is something that we would like to already! with you. We are a very warm, supportive
continue as a group. It has not only In fact, at the start of June, the group met and friendly group with a closed, private
broadened our knowledge of lupus symptoms with representatives of Hywel Dda UHB Facebook Group for daily support too.
but also educated us in the benefits of and again Kevin Weston, to discuss how we We will be celebrating our 2nd Birthday in
alternative therapies and exercise. can progress our issues locally. We are still September!
So, if anyone knows of a therapist who being supported by our Community Health So please get in touch.
would be willing to come along and talk to Council which is much appreciated. Of
us, please get in touch! course a big thank you to Kevin for his Wendy Diment
continued support.

GO THAT ExTRA MILE for people with lupus!


South London

In may the south research into Lupus and Sjogren’s Round Table group discussions on patient
london lupus group syndrome?’ Professor David Isenberg, opinion of heart disease risk led by
held 'The world Director of the Centre for Rheumatology Dr Coziana Ciurtin and other researchers.
lupus Day Ask the Research, introduced the days’ activities In addition, the topic of patient opinion on
expert session for giving us the opportunity to talk directly treatment was moderated by Dr Chris
Open lupus with researchers and doctors about Wincup and another team of researchers.
Questions & research being performed at the centre. The questions were designed in the
Answers' headed by our Patron. Rheumatologist Dr Liz Jury and Researcher knowledge of not all treatments working
Consultant rheumatologist Dr Arvind Kaul, Elvira Chocano Navarro were billed to for everyone, with the possibilities of side
the Head of rheumatology and lupus share what happens in laboratories when effects in some. The aim being to address
Patient Care at st. George's Hospital, who you consent to being involved in a study. Ms possible ways of overcoming the difficulties
is also the Host/speaker of the upcoming Navarro talked us through the video of in predicting outcomes and identifying risk.
medical Patient-Focused lectures on the ‘What happens to your blood?’ filmed The Annual Children's Fun Day Spectacular
next saturday mornings of 27th July 2019, inside the laboratory, Dr Ines Pineda-Torra in support of LUPUS UK took place on
7th september 2019 and 30th November and Dr Anastasia Kalea presented ‘Heart Saturday 13th July in South London. All the
2019. Please do come along, there are disease in lupus patients’, Dr Chris Wincup effort and
refreshments provided and the opportunity talked about ‘Fatigue in lupus’, Dr Thomas work put in
to have informal chats with other lupus McDonnell discussed ‘Complement and over the years
patients. For more information see the lupus’ and Ms Lucia Martin Gutierrez by Charlene
events section of the luPus uK Facebook closed the presentations with her latest Nkum, her
page and look out for post announcements research into Sjogren’s Syndrome: looking family and
or email [email protected] for new therapies. Freshly made friends is
sandwiches and salads were provided for
uClH PPIe event lunch during the Poster Session that very much
In June University College London UCL included ‘Diet and Lupus: What do Patients appreciated.
Rheumatology Research held a Patient and Think?’ by the Jury Lab at UCL. A summary
Public Involvement and Engagement (PPIE) of the research by Researcher George
event, entitled ‘What happens to your Robinson is in a report on the LUPUS UK
blood after you agree to take part in website Laura Sinnett
research? How can you help influence research-paper-summary/ There were

Obtaining Life Cover in Difficult Circumstances

There are a variety of circumstances under which obtaining life insurance can become rather
difficult, if not seemingly impossible.

Whilst the vast majority of individuals can insurance providers full stop. This is just to consider application after a
acquire cover relatively easily through the simply not the case. It cannot be stressed “deferred” period - a named period
traditional routes, those afflicted with enough how differently risk is perceived of time or after a medical test/
particular medical conditions, specifically throughout the insurance industry; where consultation has taken place.
less common and more obscure ones, can one company may not be willing to insure, • Excluded - offer life cover excluding
often find themselves shut out before they there is always the possibility that another cover for a specific condition/s.
have even started. The main reason for this may be prepared to offer terms. Declined - no cover offered.
is due to the initial process of underwriting Through developing relationships with •
which is typically undertaken by the senior underwriters at a variety of It should be stressed however, that every
majority of insurance providers. This is insurance providers it is evident to us that case is viewed individually and the
often in front of a junior underwriter or a risk is not a constant throughout. underwriting decision purely depends on
computer and whilst timesaving for most, the medical information supplied by
can often prove detrimental for others. There have been a number of occasions yourselves and detailed in a GP report
when clients have been referred to us from your doctor.
Many people will find themselves in a because they could not obtain life
“computer says no” scenario, where they assurance and we have been able to place We offer a free consultation to discuss your
are simply rejected as they do not fulfil the the cover required. life insurance requirements. So please feel
criteria 100%; for example, a particular free to contact us to discuss your life
element of their past will be flagged by an There are five distinct outcomes for any life insurance requirements with our friendly
automatic system and a computer cover application, these are as follows: team and let us see how we can help you
generated rejection letter will be produced. • Accept - on standard terms. and your family.
In cases like these, there is an innate lack of • Rated - The insurer has “accepted” the
ability for the insurer to view the individual application; however they have
and their medical history as a whole; and it applied an additional premium on top
is here where we can offer help. of the current premium. This is known
In many cases, people feel that if they are as a “rating”.
initially rejected by the “well-known • Defer/postpone NlP Financial management
268Cd - Currently will not
brands” they will be rejected by all accept the application, but may look - 020 7472 5555

For Your Disabled living Foundation Helpline NHs 111
Call 24 hours 111 (replacing NHs Direct in england)
Tel: 0300 999 0004
The free one-stop number is for patients with urgent,
Providing the best possible choice for people who
Information use equipment and adaptations to live a more but not life-threatening symptoms.
independent life. Parliamentary and Health service Ombudsman
Helpful Organisations Disability rights uK Tel: 0345 015 4033
Free service open to everyone. Set up to investigate
National organisation of and for disabled people. complaints that individuals have been treated unfairly
APs support uK Campaigning for equal rights for the disabled. or have received poor service from government
Tel: 0300 323 9943 Producing a range of publications on disability. departments and other public organisations and the
The Orchard, White Hart Lane, Basingstoke, NHS in England.
Hampshire RG21 4AF
The national charity, APS Support UK, aims to achieve equality and Human rights Commission Patient uK
earlier diagnosis and offer support to anyone affected Tel: 0808 8000082 Internet site providing health information to patients
by antiphospholipid syndrome (APS) through and health proffessionals.
awareness, education and research. Information and Advice PmrGCA uK (Polymyalgia rheumatica
benefits Calculators Fibromyalgia Action uK & Giant Cell Arteritis uK)
Independent benefits calculators-Find out what Tel: 0300 999 3333 Tel: 0300 111 5090
benefits you can get and how to claim Everything you need to know about Fibromyalgia, Offers support, raises awareness, and encourages including UK Support groups, pain management, research into the two illnesses.
benefits & work Publishing ltd exercise, legal information, research etc samaritans
Get the benefits you’re entitled to. Plenty of free Helpline: 116 123
downloads or subscribe for full use of website. Samaritans is available to anyone who is in any Healthwatch england kind of distress. People of all backgrounds and
Tel: 03000 683 000
british Association of skin Camouflage Healthwatch England is the independent consumer ages can contact them for emotional support.
Tel: 01254 703107
PO Box 3671, Chester CH1 9QH champion for health and social care in England. scleroderma & raynauds uK
Specialist authority on para-medical skin camouflage Tel: 020 3893 5998 Helpline 0800 311 2756 18-20 Bride Lane, London EC4Y 8EE
london lupus Centre
british Heart Foundation Supporting patients and their families, offering
Helpline: 0300 3303311 Tel: 0207 234 2155 support advice and information. Putting patients
Greater London House, 180 Hampstead Road London Bridge Hospital, in touch with each other.
London NW1 7AW 27-29 Tooley Street, London SE1 2PR
Leading UK charity fighting heart and circulatory One of the largest private hospitals in the UK scotland - NHs 24
disease, providing support and information for specialising in lupus treatment Call 111 (24 hours)
patients and their families NHS 24 is a 24 hour telephone health advice and
information service for people in Scotland
british lung Foundation lupus Canada
Tel: 03000 030555 sCOPe
Funds research and offers information and support Helpline: 0808 800 3333 (9am-5pm weekdays)
to lung condition sufferers, their families and friends, lupus europe Providing free, independent and impartial information
with more than 120 groups. and support on the issues that matter to disabled people and their families.
lupus Foundation of America
british red Cross uK Office
Tel: 0344 8711111 stroke Association
Community Services Unit, lupus Trust Helpline: 0303 3033100
44 Moorfields, London EC2Y 9AL Tel: 020 7188 7306 Provides support for people who have had strokes,
Offering valuable short-term support to vulnerable c/o Louise Coote Lupus Unit, 1st Floor Counting their families and carers. Campaigning to educate
people in the UK, whether they're recovering from an House, Guy's Hospital, London SE1 9RT and inform at to all levels of society.
operation, need a wheelchair or just need help coping Registered charity supporting lupus research at
around the house. St. Thomas’ Hospital and raising awareness of lupus. Turn2us Charity helping people in financial need access welfare
benefits, charitable grants and other financial help.
british sjögrens syndrome Association (bssA) medic Alert
Helpline Tel: 0121 478 1133 Tel: 01908 951045
Office Tel: 0121 478 0222 The registered charity that provides an emergency vasculitis uK
Self-help organisation for people with SS. identification system to protect and save lives. Helpline: 0300 365 0075
Whether a patient, carer or medical professional you
A forum to exchange views on how best to cope will find a wealth of accurate and up to date
with living with Sjogren’s syndrome. information. miscarriage Association
Helpline: 01924 200799
Carers uK Helpline offering information and support following versus Arthritis
Tel: 0808 808 7777 Tel: 0800 5200 520
Provides information and advice on all aspects of pregnancy loss.. Copeman House, St Mary's Court, St Mary's Gate,
caring for both carers and professionals. Chesterfield S41 7TD Kidney research uK Merger of Arthritis Research UK and Arthritis Care
Changing Faces Tel: 0300 303 1100 created to support people living with arthritis and
Tel: 0300 012 0275 Support through life’s ups and downs for kidney related conditions in the UK, while continuing to
The Squire Centre, 33-37 University Street, patients, their families and carers deliver ground-breaking research.
London WC1E 6JN
UK charity that supports and represents people wales - NHs Direct wales
who have disfigurements of the face or body from National Osteoporosis society Tel: 0845 4647 or 111
any cause. Helpline: 0808 800 0035 NHS Direct Wales (Galw Iechyd Cymru) is the NHS National charity dedicated to improving diagnosis, Direct service for people in Wales. It provides
Citizens Advice bureau prevention and treatment of this disease. information in English and Welsh
Contact your local branch for help and advice

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