October Newsletter 2013

Getting ready for winter!

Scleroderma New Look

Celebrating Fundraising Success

Medical Research News

Inspirational Stories

Paul Klee Celebrate the life and work of one

of art’s most celebrated Expressionists…

PAGE 6

Registered Charity, Number: 286736

October Issue 2013 News

Those who attended our Annual General Meeting in June will already know that

Kim Fligelstone and Richard Dodds have decided to stand down as trustees of the society. Kim and Richard have each contributed a huge amount to the society over many years and we shall miss their presence on the board. It’s not farewell however. One does not need to be a trustee to be able to sup-port the society and I am delighted that Kim and Richard re-main committed to our work and each has continued with a number of voluntary activities. At the end of August we said farewell to Mike Rich. During the summer the trustees undertook a review of the society’s business plan and concluded that the role of Chief Executive had become redundant. The trustees have a legal responsibility to manage the charity’s resources prudently and to ensure that they are entirely directed towards achieving our charitable objects. After a period of discussion and consultation with Mike, it was agreed that he should leave us. I would like to thank Mike for his contribution whilst he was with us and wish him well in the future. I am very pleased to announce that we have agreed a new role for Amy Barrick. Amy is now our Office and Admini-stration Manager, working part time in Bride House. Amy’s job is to run the office, to manage the membership database, com-municate with members, and to look after the day to day fi-nances including the bookkeeping and cheque processing. Amy is particularly keen to ensure emails and telephone calls get

answered promptly and donations get acknowledged efficiently. It is my strongly held view that a charity can and should provide great opportunities for volunteers to contribute their skills, experience and time. By the time you read this, we hope to have appointed a person to work alongside Amy in Bride house in the role of fundraiser and volunteer co-ordinator. We know that there are many people, members and others, who already do so much for us and we really appreciate their support. We feel that we need to manage this activity more effectively, to help those wonderful people who help us in so many ways, and that will be a focus of our appointment. Finally, I should bring you up to date with the work we are jointly planning to bring The Scleroderma Society and The Raynauds and Scleroderma Association closer together. Trustees from both charities are meeting regularly and we have identified a number of activities where we can co-operate and work more closely together. We both have limited resource and it clearly makes sense and demonstrates our responsibility as trustees to find ways to do things more efficiently and effec-tively. In the immediate future look out for things like jointly produced information leaflets, both logos on publicity material and shared funding of research projects. We will of course keep you up to date with progress. Thank you for your support for the society and the work we do. We do appreciate it.

Best wishes Steve Holloway

Trustee and Secretary

Editor’s Note: I am delighted to take on the role of Editor of Scleroderma News. As a Scleroderma sufferer myself, I am able to appreciate the role of this publication in spreading news, offering support and establishing a ‘Scleroderma family’. The work of the Scleroderma Society is invaluable, and I am thrilled to be supporting their work through my voluntary role as Editor. I am keen to make Scleroderma News more interactive, perhaps you would like to make a comment or share your story? Please get in touch! Also I am seeking volun-teers who would like to contribute to future issues, if you are a writer, blogger or photographer, I would love to hear from you. I hope you enjoy this new look issue. Hollie Thorman, Editor

The Scleroderma Society has adopted the sunflower to represent our organisation, sunflower pin badges are available for a small donation, to buy one please contact [email protected]

Scleroderma News: Welcome Page 2

Welcome to this autumn issue of Scleroderma News!

Welcome! Changes at the Society...

Recent Research Awards One of the important aims of The Scleroderma Society is to fund medi-cal and scientific research into causes, treatments and cures for scleroderma. The trustees receive requests for re-search funding which they send out for peer review. If the reviews are supportive, the trustees consider the applications carefully and then, if ap-propriate, make a financial award to the scientist or doctor concerned. We have recently made the following three awards:

£25,000 to William Gregory at the Hope Hospital Rheumatic Diseases Centre in Manchester which will con-tribute towards the costs of salary and equipment used in a project on the therapeutic use of paraffin wax treatments in scleroderma.

£18,200 to Professor David Abra-hams at the Royal Free & University College medical School Centre for Rheumatology in London for special-ised laboratory equipment required in the new laboratory at the centre.

£35,000 to Professor Ariane Herrick at the University of Manchester Insti-tute of Inflammation & Repair to allow a one year extension of the European Scleroderma Observational Study (ESOS). This award has been funded jointly with The Raynauds & Scleroderma Association.

One condition of an award is that in due course, the research is reported to us in the form of an article in Scleroderma News so we look for-ward to reporting on these three in due course.

Essex, London & Kent : Amanda Thorpe has hosted this group for 4-5 years, she said: “I have met many, many people with scleroderma. I am pleased to say group numbers have increased with new people often joining the regulars. If you've never been be-fore, the meetings are informal and no topic is too difficult to be discussed, if you want to have a laugh, give and re-ceive support, then this is the group for you! You don't have to be a Society member to attend and guests are wel-come. If you live outside the area but would like to come you are most wel-come, but remember to let me know numbers as lunch is provided!” Her husband, Michael, hosts the Caregivers Group at the same time. If you're a husband/partner/relative of someone with scleroderma and you want sup-port then this is the group for you. It meets at the same time and place as the local group meeting, for more informa-t i o n e m a i l M i c h a e l a t m i [email protected]. The groups meet 3 times a year on the last Saturday in January, May and Septem-ber.

Hampshire: Colin Beevor continues to organise his Patient and Public Involvement – Ward and Department Patient and Public Buddy Partnership. It is a fantastic scheme allowing a system of communi-cation between patient and ward man-agers where members of the Hamp-shire based Scleroderma Society help monitor and raise concerns with ward managers, contribute to decision mak-ing and represent Scleroderma patients. Colin is currently seeking representa-tives from the Hampshire group who would like to get involved. For more details on this scheme please email: [email protected].

West Sussex: Jo Frowde, Lesley Dodd and the West Sussex Group met on the 7th Sep-tember at 2.30pm at their usual wa-tering hole, Findon Garden Centre. There were eight of us, Steve and Liz, Bill and Janet, Joan, Janine, Rosemary and myself and although the good weather seems to have finally broken, it’s still extremely comfortable and the surroundings are very pleasant. Jo said: “Lesley and I have been very busy and so we hadn’t had a local meeting since February. It was lovely to catch up with everyone again.” A very good time was had by all and the group are looking forward to their next meeting, which will be at Findon Garden Centre, Rogers Farm, near Worthing, West Sussex. BN14 0RE. The provisional date for the next meeting is 1st February 2014 (to be confirmed nearer the time.) The venue is very easy to find with plenty of easy (free) parking. Jo said: “We would love to see as any people as possible!” please email Jo or Lesley for more information (see contacts sec-tion) or do feel free to just turn up on the day.

If you have any news you would like to share with members of The Scleroderma Society, please do not hesitate to email them to Scleroderma News Editor, Hollie at: hollie@scleroderma society.co.uk.

Society News The Latest News - Autumn

Scleroderma News: News Page 3

Top Tips:

Irina Healey, from Leeds, said: “I think these are good to mois-turise feet. I was reading people can use bags but then I found these in the shop, they will do a better job than bags, they have cream inside, they’re easy to use and disposable!”

My Favourite Things: Helena Rozga says: “You all know about my shoe fetish from previous articles but what you don’t know is that I am also ‘a gadget queen’ ac-cording to my husband and friends. Well a girl has to cope, especially with limited hand functionality. So yes, I do hunt out and collect gadgets that will help me. From the ex-tended handled shoe horn to my magnificent knife and kitchen gadgets.

< Most of the ones shown here are Good Grips by Oxo www.oxouk.com) but there are plenty of others on the market. Some of the large su-permarkets have their own brands too. What I like about my collection is the chunky rubber handles which are easy for me to hold and don't feel cold to the touch!”

Portsmouth Connective Tissue Conference 2013 Once again, The Scleroderma Society was invited to attend the Portsmouth Hospitals NHS Trust Patient & Public Conference: Day to Day Living with Arthritis & Connective Tissue Diseases organised by the Department of Rheu-matology at Queen Alexandra Hospital and held at The Mountbatten Centre on 25th September. The Connective Tissue part of the programme was organised by Rheu-matology Nurse Specialists Paula White and Julie Ingall and included a wide vari-

ety of talks from experts, covering an update on treatments, pain and fatigue management, exercise and physiother-apy, skin, dietary advice and podiatry. The conference was very well attended including by several members of The Scleroderma Society. This is a really valuable source of information for people with scleroderma and we were delighted to be part of it. Above left to Right: Tom Gray (physiotherapist), Paula White, Julie Ingall (Rheumatology nurse specialists), Liz Hollo-way (Scleroderma Society), and a visitor to our table whose name we didn’t get.

Happy Birthday Emily

The Scleroderma Society would like to thank Pauline Goodchild for her kind donation, which was made in respect of her sister Sylvia, who sadly passed away last October. Another donation was also made to mitochondrial disease, which like scleroderma, is rare and difficult to treat. Pauline would like to acknowl-edge her sister Theresa’s granddaughter, Emily, who suffers from mitochondrial disease and will turn 16 this month. Pauline said: “Emily is a beautiful young lady with a lovely smile.”

Society News ...The Latest News continued

Scleroderma News: News & Top Tips Page 4

RSA Conference 2013

Steve Holloway attends The Raynauds & Scleroderma Association’s Annual Patient Conference

The Scleroderma Society and The Raynauds and Scleroderma Association will be working closely together. Trustees from both charities are meet-ing regularly and we have identified a number of activities where we can co-operate! Watch this space!

You can find out more about The Raynauds and Scleroderma Association at:

www.raynauds.org.uk Scleroderma News: News Page 5

“I was delighted to be invited, with Liz, to attend the Raynauds & Scleroderma Asso-ciation's annual patient conference, held in Chester on 20th-21st September. The con-ference, which was attended by some 70 members of the RSA started with a dinner on Friday night, and continued with a full programme of excellent talks from scien-tists, doctors and other specialists on Satur-day. The event was a great success, very well organised and a good opportunity to meet old friends and make new ones. I would like to thank Liz Bevins, Jo Kaddish and all the trustees and staff of the RSA for making us so welcome.”

A Partnership

to get excited

about…

New Feature

Feature By Hollie Thorman

Paul Klee was a German- Swiss painter, and Scleroderma sufferer, whose highly individual style was influenced by move-ments in art that included expression-ism, cubism, and surrealism.

This autumn, from 16th October, The Tate Modern will be showcasing his famous work in The EY Exhibition: Paul Klee, Making Visible.

It is accepted that Klee's symptoms, and the rapid progression of the illness, ending with his death after only 5 years, in all probability indicate the rarest but most serious form of scleroderma, known as diffuse systemic sclerosis.

Although his skin and internal organs were heavily stricken, Klee’s hands

You can also read more about Paul Klee’s battle with Scleroderma in the book Paul Klee and His Illness: Bowed but Not Broken by Suffering and Ad-versity, available online and through good book shops: ISBN: 978-3-8055-9381-6.

were fortunately spared, and he was able to draw and paint without hin-drance.

AG, Basel (2010) writes: ‘I believe, however, that the defamations suf-fered by Klee, his dismissal as pro-fessor of the Art Academy in Düsseldorf by the National Social-ists, and the unintended isolation after his return to Berne were causative factors in the outbreak of the illness.

Mentally and spiritually, Klee rose above his heavy bodily suffering. Constantly, his creativity remained vigorous. Although the greater part of Klee's works in his last years can-not be linked directly with his illness, careful viewing reveals a significant preoccupation with fate and illness. It is above all in his drawings, which were created like a diary, that the sorrows and troubles of the ill artist emerge: his fears, but also his hopes and finally his resignation to the ill-ness, and his readiness for death.

Reserved, quiet and kind, Paul Klee was nevertheless charismatic. And his art is poetic. Possessing a special aura, it can enchant those who sur-render to it without any prejudice.

Paul Klee has created an oeuvre that is unique, reflecting his character closely: a body of work that moves and stirs us by its deep humanity.’

Entrance to The EY Exhibition is £16.50 (or £15.00 without donation) for adults, and £14.50 for conces-sions (or £13.10 without donation.)

Thanks to Tracey James (Hampshire Group) who brought this feature to my attention. She

will be going to see The EY Exhibi-tion at The Tate Modern, and will

organise a mini bus for readers who are interested in attending with her, for more Information

please email her directly: [email protected].

Oil on canvas: Senecio (1222) This adaptation of the human face is one of Klee’s most famous works.

Scleroderma News: Cover Story Page 6

Paul Klee in 1939 Photograph: Walter Henggeler/Keystone/Corbis

My Scleroderma Artist Paul Klee (1879 - 1940)

Inspirational People

‘Tin Woman’ Nicola will stop at nothing to raise awareness of Scleroderma…

Do you have a story to tell? Share it with other Scleroderma patients and help inspire strength. Email the Editor: [email protected]

Scleroderma News: Inspire Feature Page 7

Raynaud's phenomenon and systemic sclerosis sufferer, Nicola Whitehill – ‘The Real Life Tin Woman’ has had quite a whirlwind few weeks! Despite the physical turmoil scleroderma causes her, she’ll stop at nothing to raise aware-ness by spreading her story. She says: “The experience makes me feel good by way of helping oth-ers!” Nicola, 40, from South-port, is a patient at The Royal Free Hospital in London. She refers to Professor Denton as ‘her hero.’ She says: “Due to Scleroderma hijacking my body and limiting my options to not be able to go out and about as I would like, I am dedicated to getting more understanding and awareness out there so hopefully a cure and prevention can be found.”

The press association released her story at 11.00 on 12th Au-gust, by 11.03 the Daily Mail had bought it, by 11.10 it had been circulated online. It then went global, with The New York Daily Times fea-turing it on their front page, and over 30 different countries cov-ering the story! Nicola’s story was then printed the following day in the Daily Mail paper, which prompted ITV news to call her. Nicola was interviewed and filmed the following day and ap-peared on her local news that evening! The following week, Nicola was in the studio, at BBC Radio Merseyside being inter-viewed live on the morning show of BBC Radio Stoke. Nicola said: “That was really fun and I very much enjoyed the experience!” She jokes: “Especially since I have a face for radio!” Nicola’s local paper also ran a front page headliner naming Nicola 'The Woman Who is Al-lergic to Winter' carrying a half page feature on page 20. Nicola is keen to con-tinue spreading the word, and raising Scleroderma awareness: she said: “Please consider me if you have any meetings especially medical meetings which you may need a representative at. If I am given enough notice I can plan beforehand so that I have enough energy. I am prepared to spend days in bed afterwards to re-cover!”

Further to all of the media cov-erage, Nicola has had lots of people contact her from all over the world, which she says has been humbling. This has prompted her to put together a 'survival guide' which she has posted on her blog:

www.cosmicfairy444.blogspot.co.uk.

M A W O S N P P L C C H C

F O I H H I U P L H O I O

P T R U A L S U I K N J L

U G L P D Q Y L N F T O D

L S T L H U S M E T R O A

M C F P E O T O A P O F S

O L G P E S E N R H L S H

N E A T F D M T U Y V C A

A R Q R U E I S C S L L N

R O U I L O C A L I S E D

Y S E K P N A G W O I R S

D I F F U S E H Q U M O U

W S H C A R A Y N A U D S

O I Y M O T M O R P R E N

L M T E N S I O N H A R C

I M X J Y E E G H O M M Y

D E R M A T B P U S I A C

M A R H L I L V G E L I P

S C L E R O S I S D A S N

Break Time Fun How many Scleroderma themed words can

you find in the word search below?

New Feature

By Rachel Meredith, Essex

“This is the story of my three year old son, Harrison. In November 2012, little Harrison was finally diagnosed as suffering from Linear Morphea. The next couple of months were a bit of a whirlwind of appoint-ments running between our local hos-pital and Great Ormond Street Hospi-tal putting Harrison's treatment plan into place. Since this time Harrison has been on weekly injections of Meth-otrexate which I administer at home, and has had bursts of high dose ster-oids. Harrison also has blood tests every 2-6 weeks to monitor his liver function.

Harrison has been so brave, we know he doesn't understand why he has to have all these needles, the hardest thing is having to try to explain to him why he has to have them. Harrison's lesion is on his face and runs from the tip of his nose right up through his hair to his crown. Ini-tially his hair fell out along the lesion, but thankfully this has now grown back. Purely due to people not under-standing and not knowing about Scleroderma, we get stopped regularly by people commenting on his fore-head, wondering if he has bruised him-self or bumped his head, and quite often Harrison becomes conscious and shy about it and chooses to hide away. In June this year I decided to raise awareness and collect donations to raise this much needed awareness. I am a mobile Beauty Therapist so dur-ing my work hours I handed out infor-mative bookmarks, leaflets and posters to all my clients. I also sold wristbands and badges to raise money. My hus-band and father in law also took collec-tion boxes to work at our local port, they gathered donations, and sold wristbands and badges. Between us we managed to raise £300 for the Scleroderma Society which will go to-wards helping raise awareness and finding a cure for this horrible disease that affects so many. Through it all, little Harrison has been so brave, and we are so very proud of how he has dealt with every-thing. We worry about how the dis-ease may progress in the future and what this could mean for Harrison growing up, but with the support of his family (and with his big sister Brooke looking out for him) we hope he will be grow proud of all he has gone through, and he will not let this disease get the better of him. “

A Beautiful Cause

Linear Morphea: The Facts

Morphea occurs in 0.03% of peo-ple and is more common in fe-males

We do not expect it to progress into systemic Scleroderma

Treatments aim to prevent atro-phy and depressions of the skin, deep tissues, fat and muscle.

The three types of Morphea most often seen in children are plaque, generalized, and linear

Some patients may have itching

Two or more areas of skin are involved in the generalized form

Linear Morphea often occurs on the face, arms, and legs most of the time on one side

It can produce shrinkage of the tissue. On the face this is called ‘en coup de sabre’ (cut of the sword) because of the loss of hair along a line and thinning of the tissues below

When Morphea occurs over a joint, it may be hard to move.

Scleroderma News: Fundraising Page 8

Fundraising Heroes

By Joanne Thompson

“In February this year our family lost a

very special lady to Scleroderma. Dur-

ing her illness we became aware of the

fantastic work the Scleroderma Society

do and how much they need funding to

continue their work.

Over the last 5 months, our family and

friends have collectively arranged a

variety of fundraising events ranging

from bun sales, car boot sales, running

the Leeds half marathon, and finishing

with the biggest challenge yet of walk-

ing the Yorkshire 3 peaks.

On Saturday 13th July, the hottest day

of the year - when temperatures

reached a whopping 30 degrees, a

group of 23 family and friends, aged 12

to 69 years, set off at 6.30 am to

achieve their goal of completing all 3

peaks in 12 hours.

The hard work was not only put in by

walkers, we had other family

and friends providing essential 'pit

stops', with food, drink, plasters, clean

socks and most importantly providing

words of encouragement and love to

keep us going. We couldn't have man-

aged without them.

The group were joined for the final

stage, on Ingleborough, by a group of

ladies from South Bradford Golf Club

where Dianne had been Lady Captain

at the time of her death. They met

some of the walkers at the summit

which was a lovely gesture to show

their support. The collective fundrais-

ing total stands at £2000, with money

still coming in.”

It’s not too late to support this cause:

You can do so at www.justgiving.com/

Y o r k s h i r e - 3 - P e a k s - 2 0 1 3 a n d

www.justgiving.com/Julie-Conroy1.

What the group will remember!

It was the hottest day of the year at 30°C!

The Met Office issuing a level 3 heat wave warning to avoid unnecessary journeys ( IG-NORED all in the name of charity!)

The competition for who looked the best in their scleroderma t-shirt - This is still to be decided!

Walking over 40,000 metres and 100,000 steps each. Col-lectively, we walked 600 miles and with training walks we walked 1000 miles - which would get us to Morocco (which was cooler at 23 C°!)

We really deserved that beer when we had finished!

To The Peaks and Beyond!

From everybody at The Scleroderma Society, we wish to send our huge thanks and congratula-tions to everyone involved in these great fundraising efforts. It's supporters like you who make a big difference to everything we do and make it possible for us to continue supporting people with Scleroderma. A heartfelt thank you.

Scleroderma News: Fundraising Page 9

The Scleroderma Society is a Registered Charity, Number: 286736

Scleroderma News: Fundraising Page 10

“It was Saturday 24th August when I was bailing out my garage from rain water flooding in South East Essex. It took my husband and I three hours to empty what would be at least a dozen bath tubs of water! I kept thinking the concert the next day would be cancelled. I had heard there were also floods in Stock and Ingatestone Hall nearby. I had purchased twelve tickets for friends and family and was feeling slightly responsible for letting them down. Fortunately, this was not the case. I remember Colin Pittman, the event organiser, saying that in previ-ous years the weather had been good and so it was this year - The sun shone but I wasn’t taking any chances, thinking the ground would be soaked as it was at home. I was the only person to turn up in boots

when most people were in flip flops, shorts and sandals. The ground was bone dry, Oh well! The concert was amazing and was attended by some really friendly people all sitting around in their groups laughing, chatting, wav-ing their flags and singing ‘Jerusalem’. It was A very British affair, in the lovely Ingatestone Hall. The music was a varied mix of classical, soul and pop appealing to all in my group whose ages ranged from 20 to 60. The highlight of my day was meeting Brian’s wife Janet and their amazing friends including Ian Drury who initi-ated the concert. I was able to talk about the scleroderma Society and spread the word about Scleroderma. I understand that 700 tickets were sold, Thanks to these people, and

those throughout Essex, through the concert, the press and media atten-tion leading up to the event, have now heard about Scleroderma . A very big thank you to Janet, Ian, Colin and all of Brian’s friends for setting up the Brian Nor-ris charity in his memory and for organising a truly wonderful event which bright-ened up a wet weekend. The concert managed to raise a sizeable donation for the Scleroderma Society. Let’s hope the sun shines again next year. when I hope to see you all there! I am now looking forward to the Brian Norris charity ball at Ivy Hills Hotel , Margaretting, Essex on 16th November. Check out our website for details .”

No Dampened Spirits! Helena Rozga outsmarts The Great British Summer Time to attend The Brian Norris Appeal...

There are many ways in which you can support the Scleroderma Society: Becoming a member, making a dona-tion, joining or setting up a local group, arranging a fundraising event, shopping using our online web shop, leav-ing a legacy in your Will, and collecting postage stamps and ink cartridges are just some! We appreciate whatever you can do! We are always grateful for the help and support that we receive.

Scleroderma News: Ways to Get Involved

Fancy Getting Involved? Two simple ways you can help us this autumn...

This autumn we encourage you to persuade friends and family to join the Scleroderma Society. The cost of joining helps to support our work in the longer term. Members will receive up to date information, our quar-terly newsletter and access to our events. Membership is currently only £5 per year

and that includes four issues of Scleroderma News. Commit to five years worth of membership and pay only £20 or £4 each year! For more information please visit www.sclerodermasociety.co.uk/Joinus1.php or contact 020 7000 1925.

Can you afford to make a one off donation this autumn? The Scleroderma Society does not receive any government funding. Virtually all of our money goes towards providing support, campaigning and funding research. If you think you can help by making a one off or regular donation we would be most grateful. To give

you an example of how your donation might help; a one off donation of £5 pays for us to send a comprehensive information pack to someone who has been newly diag-nosed with scleroderma – this information is vital in those first few months of diagnosis.

1 2

Autumn Events Support Us By Attending an event!

Celia's Tabletop Sale:

Come along to Sunshine Inn Function Room in Farlington, Hants, on Saturday 19th October from 10.30-12.00, where Christmas gifts & cards etc. will be on sale in aid of the Scleroderma Society.

The Adam Joseph Stokes Memorial Charity Golf Day:

Dubai based fundraisers Paul Robins and Simon Denham are planning to hold a golf day in memory of their friend Adam Stokes, in aid of the Scleroderma Soci-ety. They hope that the event will be a success and they would like to make the event bi-annual. For more information please email:susie@Scleroderma

society.co.uk.

Music at the Riffle Club, Portsmouth Tracey James (Hampshire Group) is organising a music event that will take place on 11th October at The Rifle Club in Portsmouth. Tracey said: “The Rifle Club are kindly allowing me to hold a live music event to raise awareness and funds for the Scleroderma Society, this year I am sharing the evening with a close friend who is attempting to raise funds for the neo-natal unit in Portsmouth.” You are encouraged to come along to The Rifle Club which has been described as a ‘very cool music venue’. Headliners on in-clude We Are Farmer Lee, who are fresh from performing at the Victorious festival. They will be covering a selection of blues, rock ‘n’ roll and classic 60s num-bers. Tracey will even be joining them on the drums for a couple of tunes. There will also be sev-eral other bands including an Arc-tic Monkeys tribute! Contact Tracey to find out more. [email protected].

Page 11

The Scleroderma Society is a Registered Charity, Number: 286736

This article has been used in association with The Raynaud’s & Scleroderma Association.

Scleroderma News: Scientific & Medical Page 12

What is the cause of Raynaud’s? Raynaud’s phenomenon results from excessive spasm of the blood vessels in the extremities (e.g. fingers, toes, ears etc.). This spasm is triggered by cold or emotional stress, which can be a normal response. It causes symp-toms in up to 1 in 10 people, so is very common, but usually not associ-ated with any other disease (primary Raynaud’s phenomenon). It probably is caused by complex alterations in the balance of chemicals that narrow blood vessels and those that widen or relax the muscle in the blood vessel wall. Other mechanisms may include an increased sensitivity of nerve end-ings in the blood vessel wall or dam-age to the small vessels.

If I have severe Raynaud’s will I inevitably develop Scleroderma? The answer is very definitely no. There have been a number of studies which have been undertaken where people have followed up the severity of Raynaud’s in terms of things like the frequency of attacks etc. What does appear to put people at risk are firstly some of the nail capillary changes and also if people have ab-normal antibodies. They will have some abnormal proteins in the blood which can sometimes be present for some years and do seem to predict what is going to happen. The key thing is that Raynaud’s can be mild or it can be severe but even amongst those with severe Raynaud’s in terms of the number of attacks only a very small minority will go on to develop scleroderma.

My doctor has diagnosed me with Raynaud's. Do I need to see a consultant and if so what kind? It is important to clarify whether this is primary or secondary Raynaud’s, the latter associated with underlying diseases such as scleroderma. Most often a rheumatologist is the best person to see as most of the associ-ated diseases are rheumatic, such as lupus or scleroderma. Sometimes vascular surgeons or dermatologists may have a special interest in Ray-naud’s.

I have Raynaud’s and my hands swell up, am I developing scleroderma? Most people with Raynaud’s do not have scleroderma - and swelling of the hands can be normal in Raynaud’s that occurs in otherwise healthy peo-ple (primary Raynaud’s). However you should discuss this with your doctor as you may require tests to look at the blood vessels around the finger (nailfold capillaroscopy) and blood tests for autoantibodies. If these tests are normal you are very unlikely to have scleroderma.

Have any complementary thera-pies been proven to be successful for Raynaud’s? In a condition which can be brought on by emotional stress, as well as the cold, many people have tried self-hypnosis, biofeedback techniques and acupuncture with some success. Un-fortunately there have been very few clinical trials but they do seem to show that although initially the pa-tients claim some improvement, after

about a year many patients stop the treatment because they feel no bene-fit or it takes up too much time. Why are erythromelalgia and Raynaud’s connected when they appear to show such opposite symptoms? Erythromelalgia is a medical condition in which blood vessels dilate and lead to burning red discomfort and intol-erance of warm environments. This can occur after a Raynaud’s attack in some cases and both disorders are due to excessive response of the regulatory blood vessels to change in temperature.

Are ulcers a result of Raynaud's, scleroderma or both? Also, am I destined to get them from Ray-naud's?Ulceration, or breakdown of the skin over the fingertips or over the knuck-les, is a complication of scleroderma and some other forms of connective tissue disease such as vasculitis but does not usually occur in cases of Raynaud’s in isolation, called primary Raynaud’s. This is probably because the blood supply between attacks in primary RP recovers enough to keep the skin healthy.

DOC SPOT Chris Denton is a Professor in the Centre for Rheumatology at the Royal Free Hospi-tal in London and runs the Scleroderma Clinic. He also has a major research pro-gramme that spans both clinical and laboratory trials related to scleroderma.

Scleroderma News: Scientific & Medical Page 13

“As the weather starts to change this time of year, naturally our minds turn to the issues of the autumn and win-ter ahead, this is especially true if you are affected by Raynaud’s phenome-non. The risk of exposure to the cold and the consequent episode of Ray-naud’s is higher as the weather starts to get cold outside. Some simple measures can be undertaken towards preventing attacks of Raynaud’s during colder weather and in the long term too. Keeping as physically active as you are able will help in the longer term as it has been shown that regular physical activity helps to prevent vasospasms by increasing blood flow to the area and strengthening arterial walls. Knowing which type of physical activ-ity / exercise to perform can be diffi-cult. The exercise you choose should be sufficient to work your heart and lungs, but not so strenuous that you feel short of breath or experience pain during or a day or two after the exercise. With the colder weather it is better to plan indooor exercise; this could be at a gym, it could be by exercise equipment in your home, simple chair or bed based exercises, or even just walking up and down the stairs regularly. There are some specific ex-ercises that have been recommended, wriggling the toes, tapping the foot, clenching the fist and moving the arms are all sensible to encourage blood flow to the peripheries. Making

large, overhead circles with the arms has been recommended, but similar benefits can be achieved by the more manageable and far safer technique of pendular swinging. In pendular swing-ing you lean forwards, perhaps with the non-working arm rested on a dining table or kitchen worktop and allow the other arm to dangle, you can then swing it in a pendular action from side to side, from front to back or in a circular pattern. Performing fist clenches at the same time will increase the beneficial effect. The fist clenches could be around a soft ball that fits into the hand. To increase circulation to the toes and foot, toe tapping can be helpful; for better ef-fect though do try to get some calf muscle work at the same time; this can be achieved by pushing to stand on tip toes. For those unable to toler-ate this exercise in standing it can also be performed in sitting. Raynaud’s attacks can be related to stress, exercise / regular physical activity has a further preven-tative function in that it is known to decrease stress levels and release pent up frustrations. Just be careful not to get more pent up, anxious or stressed if you find you struggle to perform as much exercise as you’d like – due to either a busy lifestyle or non-compliant body! Some care should be taken in choosing clothing to exercise in, as garments that are tight around the wrists or ankles can worsen the pe-ripheral bloods supply. Extra layers of clothing are strongly recommended in the colder weather, as would be heated gloves, silver gloves, or even simply a second pair of gloves over your usual pair. Warm, thick socks are also sensible, but do be sure to check for any irritations post exercise as the potential development of skin

breakdown or ulcers should be moni-tored closely if you plan to increase or change you physical activities / regular exercise habits. Local ways of heating the hands or feet could also be recommended this would include a hot water bottle, microwaveable wheat pack, heat lamp or paraffin wax bath; but do be very careful if you are planning to commence treatment with any of these heat modalities, read the instructions carefully, con-sider if your hands / feet are suitable for such treatment and seek medical advice if you are unsure. Finally, do be mindful of the need to keep active to reap the bene-fits as the frost starts to thaw and getting outside becomes more man-ageable. The exercise work you put in indoors over the winter will pay off in the control of your Raynaud’s, your general fitness, and your ability to do what you want and need to do. It is a “use it or lose it” situation!

A Plan for All Seasons An article by Will Gregory - Specialist Rheumatology Physiotherapist & Advanced MSK Practitioner

Scleroderma News: Scientific & Medical Page 14

By Federico Moscogiuri Director, ARMA “The Arthritis and Musculoskeletal Alliance: a powerful force for change Musculoskeletal (MSK) disorders af-fect over 10 million people in the UK; are the fourth largest area of spend-ing in the NHS; are a major cause of time off work; and, as highlighted in the recent Global Burden of Disease study, are the single biggest cause of the burden of disability in the UK. They are also associated with a large number of co-morbidities, including depression and obesity, and have an enormous impact on the quality of life of millions of people. As the popula-tion ages, this burden is only set to increase. Each year 20% of the general population consult a GP about a mus-culoskeletal disorder. Many of them will not receive the care that they require. Many of those for whom early diagnosis and specialist treat-ment is essential will wait many weeks before getting it. Few will re-ceive information or support to self-manage and remain in or return to work. The Arthritis and Muscu-loskeletal Alliance (ARMA) exists to change this.

As the umbrella organisation provid-ing a collective voice for the entire musculoskeletal community in the UK, ARMA’s ultimate goal is to im-prove the lives of people living with all forms of MSDs. To this end, we provide a cross-sector forum for in-formation-sharing and collaborative working among our members, and a channel for joined-up influencing to improve healthcare services. We also capture evidence of best practice as well as healthcare needs and gaps in services, and support our many mem-ber organisations in the work they do for people with MSDs - nationally, regionally and locally. Our Alliance comprises 40 member organisations, ranging from specialised support groups for rare diseases to major research charities and national professional bodies. The Scleroderma Society has been a mem-ber of ARMA for many years. A per-son-centred ethos to understanding and tackling all forms of MSDs lies at the heart of everything we do. ARMA’s strength lies in its broad and diverse membership. Despite their difference in size and constituency, there is enormous common ground between all our members, all of whom ultimately strive to improve the quality of life for people living with MSDs, and ARMA brings unique added value in our ability to bring the entire sector together behind a shared banner. In recent years we have made great strides in working to-gether, sharing information and ex-pertise and speaking as one voice. For the first time, ARMA has produced a 3-year strategic plan for 2013-15 in consultation with its members, as well as a 2-page Manifesto. We also have a number of local ARMA networks across the UK, which provide a focal point for people with MSDs and professionals to get together to discuss issues of shared

concern and agree local activities, from peer support to local campaign-ing. ARMA is also the UK’s National Action Network for the Bone and Joint Decade - a global alliance of or-ganisations with a special interest in MSDs, which was modelled on ARMA itself – as well as being the UK repre-sentative on EULAR/PARE. Our achievements are many, and span a broad range of issues and policy areas. They include, most re-cently: Establishing a strategic part-nership with NHS England to support the development of MSK clinical net-works, and received DH funding for this role. Playing an instrumental part in achieving an MSK National Clinical Director for NHS England. Opening up a channel of discussion around the implications of these findings of the Global Burden of Disease study, which highlighted MSK as the single biggest cause of disability in the UK, with Public Health England. Today, the challenges for MSDs are many, but the opportuni-ties also have never been so great. ARMA is well-placed to seize these opportunities. But we could not have achieved any of what we have achieved – nor could we continue to speak with such strength on behalf of MSDs – without the active input and involvement of all our members, big and small. In particular, it is very im-portant to me personally that all our members have an equal voice around the table, and that ARMA is there for the smaller and more condition-specific organisations as much as for the larger and more established ones. Only in this way can we be a genuine alliance, and a formidable collective force. I am particularly pleased to be able to say that we have progressively expanded as an Alliance over the past year and a half, and are now more representative and more inclusive of our entire community than ever.

A Powerful Force for Change ARMA: The Arthritis and Musculoskeletal Alliance

Scleroderma News: Scientific & Medical Page 15

By Dr Sandra Guerra

“Although scleroderma is not an inherited disease it is now clear that, like almost all con-ditions, there are likely to be genetic factors that influence development of scleroderma or the pattern of disease that develops. In fact, over the last 5 years there have been major advances in the genet-ics of scleroderma which has helped understand the mechanisms leading to the condition. As it is well known, scleroderma is a complex and heterogeneous disease which gives rise to a number of clini-cal characteristics. Due to disease complexity it is very important to understand the disease manifestation and progression. Through ad-vances in genetics it has been possible to find new targets which would lead to possible new treatments and better management of the disease.

The two key areas which have contributed to the advancement of understanding are; Genome wide association studies (GWAS) and gene expression profiling. GWA studies analyse single base changes in the DNA across the genome between Scleroderma patients and healthy controls. Any changes which are seen more frequent in Scleroderma pa-tients compared to healthy controls are deemed to be associated with disease. The effect of these changes on genes are then analysed to deter-mine their role in disease. These changes can affect the amount of a gene and these differences in gene expression have been analysed in

gene expression profile studies. These gene expression profile studies ana-lyse the activity of genes. Whole tis-sue and cells (fibroblasts) profiles from lung and skin of scleroderma and healthy controls are compared. If a gene shows to be expressed at a higher or lower level compared to a healthy control profile, it is thought to be associated with disease. Changes in gene expression can lead to changes in cell behaviour, leading to an imbalance and deregulation of a normal environment, which can lead to disease and explain the different characteristics of disease. Both stud-ies produce data which suggest novel

targets to understand dis-ease mechanism and which can lead to novel therapies. To date there are a number of groups here in the UK, along with groups in France, Spain, Germany, USA and Australia which are working in collabora-tion to collect large sample numbers to produce the best and well defined stud-ies. Both GWAS and gene expression profile studies have lead to a better un-derstanding of the molecu-l a r s i g n a t u r e o f Scleroderma and have helped unravel the complex pathogenesis. Genes in im-portant areas such as the immune system (our body’s defence network), fibrosis (the formation of excess fibrous tissue) and the vas-culature (blood vessel net-work within the body) have been identified and are cur-rently undergoing functional studies to help understand their role in Scleroderma.

The next five years also show further progress ion in understanding Scleroderma with new targets areas such as epi-genetics (changes in gene amount not associated with changes in DNA), advancing. During this excit-ing time we hope to create a wealth of data which would be a powerful tool to identify novel targets for new treatments. By having a greater un-derstanding of the mechanism of Scleroderma it will lead to better management of disease for patients and possible new therapeutic targets, all of which would give a better qual-ity of life for patients. “

Genetics of Scleroderma How we can better understand the manifestation and progression of Scleroderma through advances in genetics...

Scleroderma News: Scientific & Medical Page 16

By Tani Ngcozana “Specialist nurse services began 23 years ago with the first rheumatology specialist nurse being appointed. As the years have gone by the depart-ment has expanded and specialities have evolved into distinct teams such as Clinical Trials, Pulmonary Hyper-tension, Scleroderma and General Rheumatology, however we continue to collaborate. At the moment there are two specialist nurses who look after scleroderma patients. In the White Paper entitled ‘NHS Improve-ment Plan (2004) it was acknowl-edged that with the increase of de-mands on the health care services the NHS were increasing the roles of the nurses. Our roles encourage us to work at an advanced level beyond our initial registration using existing knowledge and skills to inform and further develop our practice. Studies that have been done on experience of people with chronic conditions show that increased contact lead to im-proved patient care in their ability to cope with uncertainty associated with chronic diseases. Our goal is to en-hance scleroderma patients’ experi-ence, coordinate care, support and advice patients and carers. We utilise our specialist knowledge to support the management of inpatients and outpatients. We run nurse-led clinics, the advice line support and patients’ edu-cation. We are involved in the multi disciplinary team ward rounds, out-reach clinics and we also provide ad-vice to other healthcare professionals. We are patients’ advocates and we also coordinate care between our Centre and their local support. We

conduct our own individual research in the scleroderma field and present at conferences and share knowledge with other healthcare professionals who look after scleroderma patients. We liaise with other healthcare pro-fessionals such as pulmonary hyper-tension specialist nurses, physiothera-pists, GPs, Dermatologists, Tissue Viability, Occupational Therapies, and Cardiologists, Vascular, Gastroen-terologists, Practice Nurses and oth-ers. We also undertake service devel-opment and audits including support for application for advanced biological agents such as bosentan for severe digital vasculopathy. In 2011 -2012 we conducted a patient satisfaction audit on the spe-cialist nurse services. 150 scleroderma patients were invited to complete a questionnaire and we re-ceived 110 responses. The respon-dents were of all ages, both sexes and they were asked 10 questions. 63% revealed that they knew of the Royal Free SSc Specialist Nurses and 72 out of a 100 reported to being attended to by one of the nurses. When asked about their first point of contact a majority admitted to seeking advice from the RF advice line, followed by GP, local rheumatologists and Con-sultants’ secretaries. When they con-tacted the specialist nurses, more than half were satisfied with the re-sponse they got. A majority found the services to be of great value for them. We asked the patients how long we took to respond to their calls, a ma-jority said we responded the same day. Patients contacted us due to exacerbation of their condition, edu-cation, flare up of ulcers, for reassur-ance, medication, appointment que-ries and other reasons. Patients felt that we were knowledgeable in

scleroderma, accessible, supportive and it was comforting to speak to someone who understood their con-dition. In the future we hope to be involved in more teaching pro-grammes for other healthcare profes-sionals locally and nationally. We hope to conduct more telephone clinics, to continue to be involved in research and also review our nursing care to improve the services we pro-vide for our patients. The scleroderma specialist nurses are there to enhance patients experience, encourage patients to self care and to educate.”

Contact Specialist Nurses at The Royal Free Hospital, London:: Nurse led lines for general inquiries only, in non emergencies. If the nurse is unavailable please leave a message: Scleroderma queries: 020 783 02326 and Pulmonary hypertension: 020 7472 6354

Specialist Nursing This issue we take a look at the role of The Scleroderma Specialist Nurses at The Royal Free Hospital, London...

Advice

Support

Patient education

Outreach clinics

Patient advocates

Research

Scleroderma News: Scientific & Medical Page 17

“Scleroderma is a complex disease with a spectrum of clinical manifesta-tions. One area of intense research being carried out at the Royal Free Hospital and around the world fo-cuses on scleroderma lung disease. There are two major types of scleroderma lung disease; one type known as pulmonary fibrosis, is due to scarring in the lungs and the other is pulmonary arterial hypertension which is due to high blood pressure in the lungs. In pulmonary fibrosis, injury to the lungs results in a wound heal-ing response to repair the damaged tissue. Unlike under normal circum-stances where this process would automatically switch-off once tissue has repaired, in scleroderma this process continues and eventually leads to extensive and progressive scarring of the lung tissue, filling the air-spaces with scar tissue, reducing oxygen up-take, causing organ damage and severely impairing lung function. Pulmonary arterial hyperten-sion is a severe condition in which high blood pressure in the lungs re-sults in structural alterations within the pulmonary blood vessels including increased growth of cells and deposi-tion of scar tissue. This process, known as vessel remodelling, is like wound healing, but the scar tissue is found in the wall of the blood vessels. These structural changes result in thickening of the wall and narrowing of the blood vessel which causes in-creased blood pressure in the lungs. This increased pressure causes the heart to work harder to pump blood through the lungs leading to heart damage. Some patients with pulmo-nary fibrosis also show signs of high blood pressure in the lungs, suggest-ing that scaring of the lung tissue may also influence the processes that regulate the thickening of the pulmo-nary blood vessels.

There have been significant advances in both these areas in terms of treat-ments that are currently available. However, these are not always effec-tive and they can have side effects. Therefore both pulmonary fibrosis and pulmonary arterial hypertension are areas of intense study. New and exciting research themes that are currently being investigated into scleroderma lung disease research, and that are likely to have future im-pact on patient treatment are the role of inflammation, the influence of cell metabolism (which is a primary regulator of cell growth) and under-standing the scarring and remodelling process. Studies are currently ongo-ing looking at the role of the immune system and how the body defends itself against infection and these are providing clues into the mechanisms that are involved in pulmonary fibro-sis in scleroderma. Another ‘hot’ topic of research is oxidative stress and how this process influences the inflammation, in particular how blood vessel cells are activated by oxidative

stress to produce and secrete inflam-matory molecules (cytokine and chemokines) that are believed to be involved in early phases of the patho-logical processes that lead to pulmo-nary fibrosis. These studies can per-haps be particularly useful in identify-ing biomarkers which can be used as diagnostic tools. Significant amount of work around the world is also being carried out on the growth factors that control scarring and remodelling in the lung. Discovery of the key players and molecules in this facet of scleroderma will lead to the identifi-cation of new targets for drug devel-opment and in turn new and more effective treatments in the future. The role of inflammation is also emerging as new and an impor-tant area of study in pulmonary arte-rial hypertension in scleroderma. In particular, these studies are likely to lead to the identification of specific cytokines that may be associated with disease extent and outcome, and may be useful as biomarkers to assess response to treatments. In addition, several new model systems that have been developed recently and which can be used in the research labora-tory to study aspects of scleroderma in what is termed pre-clinical studies. These will be invaluable models for future study and to increase our un-derstanding of the disease process in pulmonary arterial hypertension. They will also serve as important pre-clinical models to be used for making informed decisions about potential future therapies and their effective-ness in clinical trials. It is a very excit-ing time to work in scleroderma re-search, and the pace and speed with which the field is progressing can only lead to better understanding of the disease process and ultimately to im-provements in treatment and patient care over the next few years.”

Looking at Lungs Dr Markella Ponticos explains Scleroderma Lung Disease...

Win a trip to Paris! With The European League Against Rheumatism

This Autumn The European League Against Rheumatism (EULAR) is launching The Edgar Stene Prize Com-petition 2014. EULAR are inviting people with rheumatic and musculoskeletal diseases (RMDs) to write about the changes they would like to see made, in order to improve their lives and to create a better world for people with RMDs. These changes could include social attitudes, health and social care, the environment, travel and work op-portunities. EULAR said: “Some changes will take longer to come about than others, so we have set the deadline for our vision for a better future in the year 2043. We hope this competition will provide many inspiring visions for what life could look like for people with rheumatic and musculoskeletal diseases by 2043.” The winner will be invited to

attend the Opening Plenary Session of the EULAR Congress in Paris, where they will be awarded their prize of €2000. EULAR will also provide the lucky winner with travel to Paris and hotel accommodation for up to 4 nights as well as an invitation to the Congress Dinner. If you would like to take part, here’s what you should do: Using the title: ‘Vision 2043 – my ideal world for people with a rheumatic or muscu-loskeletal disease’ - submit an essay not exceeding 2 pages (A4) in your own language to your national EULAR member organisation, by 31 Decem-ber 2013. For more information please visit www.eular.org. The winner will be announced on 11 June 2014, at the Opening Ple-nary Session of the European Con-gress of Rheumatology in Paris, France.

Scleroderma News: Pharmacy Page 18

Ask The Pharmacist:

Jay Pang explains Iloprost “Iloprost is a vasodilator (like amlodipine and losartan) which opens up your blood vessels to improve circulation around your body. Iloprost is given through a drip into a vein in hospital over several days. You may feel an improvement in your cir-culation straight away, and the effect carries on for weeks to months following the infusion. Ulcers will also improve due to better blood flow. Because iloprost is such a good vasodilator, it may lower your blood pressure. Your nurses will check your blood pressure regularly during your infusion and your Dr may advise you to tem-porarily stop any medicines that lower your blood pressure. Other side effects such as headache, facial flushing and sickness disappear once the infusion has stopped, or you will be given paracetamol or anti-sickness medicines to help.”

Notice board Local Contacts and support services

Inspirational Quote of the Season “The real man smiles in trouble, gathers strength from distress, and grows brave by

reflection.” - Thomas Paine (1737-1809) Political activist, author, theorist & revolutionary

Scleroderma News: Notice board Page 19

Local Group Name Contact Telephone Email

Powys & Shropshire Jennifer Ames 01544 267988 [email protected]

Scotland Frances Bain 0131 477 1122 [email protected]

South London Celia Bhinda 020 8698 6294 [email protected]

Bedfordshire Rita Boulton 01767 312544 [email protected]

Oxfordshire & Berk-shire

Melanie Bowen 01865 517033 [email protected]

East Sussex Rosanna Clifton 01424 426738 [email protected]

East Midlands Cheryl Darch 0116 2717180 [email protected]

West Sussex Lesley Dodd Jo Frowde

01903 753971 01403 741445 07922274167

[email protected] [email protected]

South West England Judith Foster 07985 335 336 [email protected]

East Yorkshire Lynn Hind 01482 354312 [email protected]

Local Group Co-ordinator

Liz Holloway 01243 539466 [email protected]

Hampshire Tracey James 02392 677476 [email protected]

Merseyside H. Lingwood 0151 2801194 [email protected]

East Anglia Jacky March 01394 286637 [email protected]

Wiltshire & North Hampshire

Lynn Morton 01980 863444 [email protected]

Surrey Nicky O'Shea 01483 764524 [email protected]

North Wales Kate Owen 01492 515834 [email protected]

Lancashire & North West Yorkshire

Sheila Procter 01282 429004 [email protected]

South Wales Belinda Thomson 02920 625056 [email protected]

Essex, Kent & East London

Amanda Thorpe 01702 344925 [email protected]

Derbyshire, S.Yorkshire, Staf-fordshire & Cheshire

Diana Twigg 01298 24539 [email protected]

North East Scotland Susan Wilson 07921 214716 [email protected]

Buckinghamshire & Hertfordshire

Marilyn York 07702 592 387 [email protected]

RSA Ireland Michelle McGill [email protected]

Join us on Facebook! www.facebook.com/sclerodermauk

Online Support We have set up a new and comple-mentary commu-nity powered by Health Unlocked. If you are a Face-book user you may have seen advertisements pop up on your page. Why not give it a go? Have a look around, meet and get sup-port from other people with Scleroderma.

Charity number 286736

Liz Holloway, Local Groups Coordinator said: “Welcome and thank you to two new local group contacts, Susan and Judith, who have kindly volun-teered. Susan has joined Frances in Scot-land, while Judith's group is SW England, both huge areas. They join 20 other local groups around the country, all much ap-preciated!”

Contacts

Scleroderma News: Contacts Page 20

Steve Holloway (Secretary) steve@

sclerodermasociety.co.uk

Susie Hoare susie@

sclerodermasociety.co.uk

Helena Rozga helena@

sclerodermasociety.co.uk

Office & Administration Manager: Amy Barrick

020 7000 1925, amy@

sclerodermasociety.co.uk

Local Group co-ordinator: Liz Holloway, [email protected]

Helpline Manager: Helena Rozga, helena@

sclerodermasociety.co.uk

Event enquiries: Susie Hoare, susie@

sclerodermasociety.co.uk

Events Calendar Calendar

@sclerodermasociety.co.uk

Helpline: Although The Scleroderma Society can not offer medical advice, they operate a free helpline, of-fering a kind ear. We will help in any way we can be-tween 9.00—21.00 every day. Call 0800 311 2756.

Carers Support Group: Michael Thorpe 01702 344 925, michael@

sclerodermasociety.co.uk

Specialist Nurses: Nurse led lines for general inquiries only, in non emer-gencies. If the nurse is un-available please leave a mes-sage:

Liverpool Aintree Univer-sity Hospital: Jan Lamb

0151 525 5980 bleep 2231

Bath Royal National Hospi-tal for Rheumatic Diseases: Sue Brown 01225 428 823

Belfast Ulster Hospital: Audrey Hamilton 02890 561 310

Dundee Ninewells Hospi-tal: Steve McSwiggan 01382 633 957

Leeds Chapel Allerton Hospital: Elizabeth Tyas 0113 392 3035

London Royal Free Hospi-tal Scleroderma queries: 020 783 02326 and Pulmonary

hypertension: 020 7472 6354

London Royal Brompton Hospital Respiratory que-ries: Lucy Pigram 07758 8943175

Manchester Hope Hospital Liz Wragg and Catherine Lambe 0161 206 0192

Newcastle Freeman Hospital Scleroderma queries: Karen Walker 0191 223 1503 and Pulmonary hyper-tension: Rachael Crackett /

Julia De-spyza 0191 213 7418

Portsmouth Queen Alexandra Hospital: Paula White / Julie Ingold 02392 286935

Connecting you to Scleroderma Professionals, groups and nation wide support networks

Scleroderma News

Write to: The Scleroderma Society

Bride House,

18-20 Bride Lane,

London

EC4Y 8EE

Phone us: 020 7000 1925

Email the editor:

hollie@scleroderma

society.co.uk

Printing & Publishing:

Jarvis & Company

Issuu.com

Registered Charity Number: 286736

Front cover Paul Klee image reprinted with permission and licence from Bridgeman Art Library Ltd. Licence no. 65474.