Tightrope newsletter of the Scleroderma Society Summer 2012
Wear Your Gloves to Work Day
Plus: London Marathon EULAR 2012 Physiotherapy
welcome
Hello everyone and a very warm welcome to the summer 2012 edition of the Scleroderma Society newsletter. I would like to say isn’t it wonderful that summer is now upon us but I fear that would be a bit far-fetched given this very prolonged cool, wet spell we are currently experiencing! At least it is not snowing!
Susie Hoare, Trustee susie@sclerodermasociety.co.uk
why Tightrope? Choosing a new name for a newsletter is always difficult. So this is why Tightrope is only a temporary name. Over the next few months we are going to be asking our members and supporters what they think of our name, our logo, our newsletter and other publications. Some people love our current logo because they feel that it explains perfectly what living with scleroderma is like. Others think that it is a bit negative. It would be great to have your opinions. We will be starting the exercise at the AGM in July and will be sending out surveys and ideas to all of our members after that. In the meantime, if you want to share your opinions please email them to Mike at the office or any of the trustees or, indeed, drop us a line.
Contact us... Telephone: Mail:
Back to business, and yet another exciting spell for the Society as we look back on our first WYGTWD (Wear Your Gloves to Work Day) which took place on June 29th, International Scleroderma Day. Looking back over the last few months, we have had the excitement of the London Marathon and the EULAR (European League Against Rheumatism) congress, held in Berlin this year; not to forget the BSR conference (British Society of Rheumatology) where for the first time, we handed out DVDs with copies of our information leaflets on, for nurses and other HCPs to take away with them and print off their own copies, for their own information to use in clinics, and to pass on to their patients. And last but not least, in May we launched our fresh and very extensive new website, up to date with all the latest news and events from the Society as well as offering a wealth of information on scleroderma and an extensive bank of useful links to other organisations and websites, which may be of use or interest to different people. Furthermore, we continue to grow our Twitter and Facebook following, and have a new presence on Health Unlocked, an online space for blogging and discussion. There will be more about all of these exciting developments as you read on through this newsletter. Once again, we send our thanks to the many supporters, volunteers and fundraisers who give so much of their time for the good of the Society and people affected by scleroderma, and without whom the Society would not be where it is now. Let’s look forward to next years WYGTWD with excitement after the success of this year - you don’t have to be going to work to wear gloves and raise awareness with WYGWD – you can incorporate it into your daily life, whatever you’ll be doing! Warm regards
Susie :-) Susie Hoare Trustee
020 7000 1925 The Scleroderma Society PO Box 581, Chichester PO19 9EW Email: info@sclerodermasociety.co.uk
society news “our aim is to become the support group for people with scleroderma” New web site launched
We are pleased to say that our new website has now been launched. The site features all of the information that the old one had including downloadable leaflets but also includes new features such as information for people newly diagnosed and a new section that we will be expanding over the next few months - living with scleroderma. We are already planning further improvements and have just received a grant from the British Association of Dermatologists to produce some video clips for the site focusing on localised scleroderma.
Social media
Love it or hate it, social media is here to stay and it is an increasingly important way of communication with people of all generations. We have a Facebook page and a twitter page so why not sign up and join the conversation.
Christmas Cards
Yes, it is that time again. While it is still quite a distance off, it is worth putting in your order for the Society Christmas cards as they often sell out and we feel this year they will go especially well. As always, our Christmas cards would not even exist without the help and support - not to mention the hard work of David and Celia Graham. Once again, they have organised the artwork and the printing and will also be sending them out. The money we raise from Christmas cards is really important to us and makes a real difference to what we can achieve in the year. Don’t forget to get your order in.
New Leaflets
Spokespeople wanted
We have recently been putting some We sometimes get approached by finishing touches to our patient the press to talk about scleroderma. leaflets and we are now producing Whether, local or national newsthem in two different paper, local radio or a news ways. They are still website, the one available in print and thing that they Childhood on set scleroderm will continue to be are always keen a so with a refreshed on is to speak design being used to a real person on our leaflets as with scleroderma. they come up for While we have re-printing. We some spokespeoare also providing ple, we always need the information as more as otherwise Fact Sheets that we are offering the can be downsame people for inloaded from our terview all the time. website. These If you think you could are ready to print speak out about and we hope that scleroderma for us we they are both useful for would be most gratepatients as well as medical profesful. We would probably only need sionals who increasingly want to you to do it a couple of times a year print out bespoked information for at the most. If you like, we could their patients. also provide you with some basic media training. Please contact us at Publications evaluation - the office if you are interested. Childhood onse t scleroderm a Scleroderma is the Greek word that can be trans becomes shiny lated as “hard and hard. There skin”. The skin is a wide varie ing is the most ty of diseases prominent featu in which skin re. Some of them (localised sclero hardenare more or less derma), and can be in patch limited to skin band which can es (morphoe restrict the move a), or occur as ment of the joint a tight deformed (linea and cause the r scleroderm joint to beco a, also known ar scleroderm me as linear morp a can affect the hoea ). Sometimes lineface and scalp “scleroderma exclusively and en coup de sabre is known as ”. In the begin to the patch ning, there may of abnormal be a purplish skin, before it loss of fatty tissue edge becomes hard and shiny. Often beneath the abno there is rmal skin and and bone tissue slower growth s underneath. of the muscle A minority of volvement of children with other parts of scleroderma the body (this have intion to the hard is termed syste skin. Internal mic sclerosis) organ involveme in additimes the heart nt can lead to , lungs or kidne symptoms of ys can be affec circulation (Rayn difficulty in swall ted and this may aud’s phenomen owing, often require speci with heartburn. on) is often also fic tests and treat Somepresent. How common ment. In syste is it? mic sclerosis, poor Scleroderma is a rare disea se. Estimations of Localised sclero its frequency derma is the never exceed comm on form in childr 3 new cases in dren with sclero 100 000 of the en and is more derma have the popu frequ type called syste lation every year. ent in girls than ethnic group s have not been mic sclerosis. boys. Only abou It is found in done. It can appe t 10% or less girls, but after all races but of chilar in every age; puberty, it occur studies of the systemic sclero frequencies in s more often sis before pube in girls. different What are the rty occurs equa causes of the lly in boys and disease? Scleroderma is an inflammato ry disease, but bly an autoimmu the reason for ne disease, which the inflammation means that the other organs has not been of the body are immune syste exactly disco m of the child also affected. vered yet. It is excessive fibrou reacts against The inflammatio probas tissue durin the skin. In syste n causes swell g the repair phase direct trauma mic sclerosis, ing and heat, . The cause is followed by abno to the skin in not known, but the case of locali rmal laying down a number of sed scleroderm of Is it inherited? triggers have a, and rape seed been reported oil in systemic such as No, there is no sclerosis. evidence of stron g genetic susce familiar occur ptibility for sclero rence of this disease. Studi derma so far, appear to be es with large though there association with enough numb are some rare genes that are ers of families case reports associated with remain to be of the Can it be preve done. In adult other autoimmu nted? studies, there ne diseases. There is no know n prevention for this condition. Is it contagious ? No. Some infec tions perhaps may trigger the do not need disease onse to be isolated t, but the cond from the other ition itself is not s. infectious and the affected childr en More Scler
oderma Socie ty Fact Sheets
could you help?
can be found
at www.sclerode rmasociety.co.
We want to make sure that our publications are the best they can be. Part of doing that is to get feedback from a range of people - the most important of whom are the users. As such, we are looking to set up an evaluations committee which will comment on new leaflets and publications as well as our electronic media such as the website. All of this can be done remotely but it would be useful if you had a computer and could join us on the odd teleconference. If you are interested please contact Mike at the office.
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Volunteering
As you all know, up until recently the Society has been managed and run soley by volunteers for the past 30 years. We now have one member of staff but that is just one pair of hands and we will continue to need volunteers if we are to move forward and thrive. We will be approaching members over the next few months to see if you could help and what skills you have. An hour a month can make a difference, so please don’t be shy.
Wear yo Hull Meeting in gloves
Quiz team in gloves
WYGWD at Kingsbury High School
our gloves 2012
Wear Your Gloves To Work Day began as an idea from a “think” session organised to support the Scleroderma Society by the pharmaceutical company Pfizer. From the small kernel of an idea, it grew into what we hope will become a very popular national fundraising and awareness day to help raise both money for the Society and awareness of scleroderma. We wanted something fun and easy to do but which would get over a clear message. The 2012 event has proved to be a great success. Here is a very quick, and small round-up of what happened around the country on June 29th... It is always nerve wracking when you launch any kind of event and Wear Your Gloves to Work Day 2012 was no exception. Would people take part? Would we raise awareness? Would it be a good fundraiser? We were worried but we needn’t have been. In the end, the first WYGWD was a tremendous success and in many ways exceeded our expectations. People across the country and, indeed, the globe really put themselves out to make sure that it was a success. We will be rounding up all that went on and publishing many more pictures and stories on the internet soon but we wanted to include a flavour here.
Free Hospital in London and were joined there by staff and patients to raise awareness. At Kingsbury School in Brent, they did some tremendous work with both staff and students wearing gloves and then featuring in an article in the local newspaper. Wear Your Gloves to Work Day even went global and we received a number of pictures from individuals and groups in different countries who had got their gloves on. Events took place in Bulgaria, Portugal, Spain and even as far afield as Argentina. We also went to parliament to raise awareness. Julian Smith MP wore a pair of pink rubber gloves in support of the Day.
All sorts of people wore their gloves on the 29th June. In Hull, the Children’s Services Team held a meeting with everybody wearing gloves. There was also a lot going on at the Mandarin Oriental Hotel Group where with people donning their Look online for gloves for work in the London Office more information and please send and Hotel. us suggestions for next year. We look forward to many more of you A number of the Scleroderma taking part. Society trustees met at the Royal
#WYGWD
Tweeted all overthe world to increase awareness
We distributed over 400 printed copies of our fundraising and awareness pack which helped support events across the UK. The pack included information on running events, getting coverage from local press and how to raise money while having fun.
Glove of the day was a feature of our Facebook campaign with people uploading their favourite gloves. Was your’s featured?
Planning for 2013 We are already planning Wear Your Gloves 2013. Would you like to take part? Have you got any great ideas that we can put into action? Please let us know. Our aim is that WYGWD will be bigger and better next year but we can only do that with your help! Take part and let us know how we can help.
Ask a pharmacist
Jay Pang is a pharmacist at the Royal Free Hospital. Over the next issues of the newsletter, Jay will be looking at some of the more common medications that are used in scleroderma. This time she looks at vasodilators that are often a first drug used to help with Raynaud’s Phenomenon. These medicines work in Raynaud’s by dilating blood vessels and improving the flow of blood around the body. The most commonly used groups of medications are calcium channel blockers which include Nifedipine, Diltiazem, Amlodipine, Felodipine. Also used are Angiotensin II receptor antagonists or blockers commonly known as ARBs. Medicines in this category include Losartan, Candesartan, Valsartan and Irbesartan. Another kind of medication used are SSRIs or selective seratonin reuptake inhibitors such as Fluoxetine, Paroxetine and Sertraline. The majority of these medicines are used “off-label”. This means that the drug can be used to treat other conditions. For instance, losartan is used to treat high blood pressure and fluoxetine for depression. However, in Raynaud’s phenomenon patients, they are used to dilate the blood vessels. They are the most effective and therefore firstchoice drug treatments for Raynaud’s.
To avoid side effects, the medicine will be started at a low dose and then gradually built up in order to control your symptoms. Side effects which are most commonly reported include lowering of blood pressure, flushing, palpitations, headaches, and dizziness. The calcium channel blockers may also cause ankle swelling. Any side effects may improve with time and it may help to take these medicines at night if you feel dizzy or light-headed. The clinical response to each medicine and its side effects will vary from one patient to another, and it is worth trying another drug in the same group if you find you cannot tolerate a certain medicine. If your symptoms are not controlled with one drug once the optimal dose has been reached, your Doctor may add in a medicine from another of the groups listed above. Some other medicines may possibly interact with these drugs. You should always discuss any new medicines with your Doctor, and tell any Doctor involved in your care that you are taking these medicines. Further information can be found in the leaflet inside your medication box including details of how to take the tablets. The leaflet may not specifically mention Raynaud’s and the doses stated may be slightly different to what you are taking because Raynaud’s is an off-label use of the medicine. If you have difficulty swallowing tablets, let your Doctor or Pharmacist know as some of these medicines are available as liquids.
shorts Sclerodema
We have a new member who has been diagnosed with sclerodema. This is very rare and we wondered if any of our members have had a similar diagnosis. If you have, please let us know as we are keen to speak to you.
Essex fundraiser
If you live in Essex and like autographs you need to get along to Hollie Thorman’s fundraiser on the 13th October. Hollie has spent a lot of time collecting autographs from the great and the good and is going to auction them on behalf of the Scleroderma Society. More details will follow so keep an eye on the website.
Scleroderma and diabetes
One of our members has diabetes and would like to have contact with anyone who is on insulin for diabetes please contact Kim or the office if you would like to be in contact.
Diffuse atrophic morphoea
Has anyone managed to find a helpful treatment for diffuse atrophic morphoea if so please contact Kim or the office.
Some dates for your diary
EULAR 12-15th June 2013 in Madrid 3rd World Systemic Sclerosis congress 6th – 8th 2014 in Paris
Thames Path Challenge
We are looking for people to join our team for the Thames Path Challenge on the last weekend in September. 50km in 12 hours or 100km in 24 hours. Can you do it, Check out the website for more details or contact Mike.
fundraising feet Top:Ally Pitfield Right: Ally and his team. Left below:Kevin Massey and Jim Carver.
After three weeks of incessant rain, it looked like it would be a long, wet day for the Society’s nine London marathon runners this year, on Sunday April 22nd. But as the 35,000 runners descended on the start line in Greenwich, the weather Gods smiled down with sunny warmth as for the first time in weeks, the rain held off, the sun broke through and it was perfect conditions for a marathon, dry and mild. All our runners were wearing the Society’s blue running vests, spreading awareness of scleroderma. Amazingly, among the thousands of people at the start line, two of our runners, Jo and Steph, who’d never met before, bumped into each other by noticing the Scleroderma Society vests they were both wearing. Uncannily, the same thing happened to Jim and Kevin who even went on to run most of the race together. We send our congratulations and thanks to the Society’s gold bond team, Ally, Gary, Matthew, Rob, Kevin and Jim. Special thanks also go to our team of ballot place runners who also raised funds and awareness for scleroderma and the Society, Amy, Jane and Jo. They were accompanied in spirit by Lee who ran the Brighton marathon instead, one week prior to the London marathon, this April. Between them, they raised a massive £25,000 before Gift Aid has even been added. We cannot express how grateful we are to all those who ran and their families and friends who supported them throughout their fundraising and training over many long months. Tough, deep-spirited, and very determined! They spent the last six months, from the end of autumn, through the darkness of winter and into early spring, heading out the front door in their running shoes, pounding their way through 3-5 training sessions per week, hours on hours, gradually increasing the distance they could run from a few miles up to around 20-22 miles, in preparation for the full 26.2 miles they had to traverse on race day. They ran through wind, rain, sunshine, and hopefully not too much hail or snow! All with the same goal in mind; raise as much awareness and funds for scleroderma as they can; each of the runners has a personal connection with scleroderma, and it is therefore a cause close to their hearts. They all took immense pride in crossing the finish line and receiving their finisher’s medal; just award for the time and effort they and their families dedicated to not only their training, but also their fundraising campaign. And here are the words of one of the runners herself, Amy: “What an amazing day! Even though it was the wettest April in as long as anyone can remember, the sun even shone for a few important hours! The atmosphere at the start was palpable...lining up at the start line wrapped in a foil blanket waiting for the crowd to inch forward to the start line.....then it was away! All those months of training to be put to the test! Running a marathon takes quite a long time, but it passed by so quickly....so different to training where most of the time is spent by yourself, willing yourself to keep going on. Now there are vast amounts of well-wishers cheering your name and getting behind the runners, it’s really quite extraordinary, and very touching. A day where everyone comes together. I am proud to be able to say that I was part of such a wonderful team of people, all having their own special reason to raise money for the Scleroderma Society. I finished a little bit faster than last year, and more importantly reached my fundraising target, so I would like to say thank you to all those kind souls who chipped in and helped me get there we did it!” Run for us! If you have your own place in the London marathon, or any other, and would like to join our team, raise funds for us and wear one of our race vests, please contact susie@sclerodermasociety.co.uk and we’d love to hear from you. If you are interested in running for us in 2013, register your interest by writing to susie@sclerodermasociety.co.uk .
Thank you!
Between 11th March 2012 and 13th June 2012 we received £30,229 in donations, subscriptions, Gift Aid and Give As You Earn. This is a wonderful amount and our grateful thanks go to all those kind and generous people and organisations who contributed. This includes sponsorship from the friends and supporters of all those who have set up fundraising pages on the JustGiving and Virgin Money Giving websites. If we have missed your name from the list we apologise. Theresa AllsoplMrs. Jennifer AmeslMrs. P ArkleylVicky ArnoldlMrs Clare AtkinslMrs Beverley BagnalllMr Ted BakerlMrs. Sarah BaldwinlMrs Ann BarneslMrs JA BaxterlLynsey BeamondlMr W BeaumontlMrs. Patricia BennettlMrs M Berryl Peter & Jackie BettesslMrs. Lynwen BicklelMrs. AJ BinnslMrs BS BlightlMr M BradshawlMr. Alan BrainlMr PW BrazierlMr R BridgerlMr M BridgeslMr. S N BrookslMrs G BurnlMrs. Susan Busuttil lAileen CampbelllMr. Jim CarverlMrs. Jackie ChildslMiss Janet CoelMrs. Rosa Lucia ColelLJ ColemanlKaren CooklLesley CookelMrs Hilary CornwelllAdrian CraiglMrs. Patricia CulpinlMrs. Mafalda-Anne de’SalMrs Lesley DoddlMrs. Lyn DuplocklMr PH DyerlMr C EagleslMrs Loreen ElkingtonlMs Evelyn FairbrotherlMr S FligelstonelJudith FosterlSarah Frith lMs Geraldine FrostlStella FrylMrs. June GardnerlMrs D GerrardlMrs. Doreen GibsonlMrs. Susan GilbertlMs C GileslMrs K GlynnlMrs. Carol GwatkinlMrs. Gill HagyardlMrs SR HalllMr I HamiltonlMrs Rosalyn Harper lBarbara HaucklLissete HawkinslMrs. Carmel HilllRay HoldichlMr S HollowaylMrs E HollowaylM HollywoodlMrs JY Holmes-WalkerlMr RJ HousechildlMr M HubbardlMr M HubbardlMrs
EA HugginslMrs. Susan Hughes lMrs. Tracey James lMrs. Doreen JoneslMrs Christine JoneslMr J Jones lMs Anthousa KapatsoulMrs. Rita KeirlMrs Heather KewlMrs V Kingham lMrs HL Kingmanl Tamsin KirkpatricklBecky KitchingmanlMrs. Helen KokkinoslMrs. B LauderlMiss M LeitchlMrs. June Lindsley-FrostlMrs BC Lloyd lMrs. S LomaslMr. Trevor LowelMrs. Dorothy LuxtonlMiss JT MadinlMrs Jacqueline MannlMrs. Sandie MarneylMr C MartinlMrs. LC MasonlMs Lesley MathewslProfessor Valerie A. MaxfieldlMiss Samantha MayalllMiss M McCollumlLorraine McGrathlMr. Brian McKeel Dr J McShanelMr W MegarrylAnna MitchelllMr W MoorelMs Anona MorganlMrs. Maureen MunkslMr. Roger NeedhamlMiss Wendy NewmanlEmma NorrislMrs. Carole Ogilvie lMrs. Valerie Owen lMrs. Hilda OwenlMr & Mrs C PalmerlMrs Hina PanchallMiss MC PaynelMr. Oris PembertonlMrs. Joyce PerkinslMrs. Carol PitherlMrs CM PlantlMrs B PollardlMr J PollingtonlMiss Lisa PoolelMrs. Margaret PoolerlProfessor AJ PricelMrs. Sheila ProcterlMrs Diana RainbacklMr. John ReidlMr John RichardsonlR RobertslMrs. Arlene Robinson lCindy RochlMrs JA RochelMs Helena RozgalMichael RushlMr. Chris SaggerslSue SalamousaslMrs Susan Saperia ALCMlD SavillProfessor JE Sayers lMrs DE ScottlMrs. Viv SelbylMrs. Etel ShephardlJulia SibleylMrs Marjorie SimpsonlMrs JM SimpsonlSonya SinclairlMrs RA SmithlMr P SmithlMrs Linda StewartlMrs. Valerie StoreylMrs EM SwainlDawn TaylorlMrs. Colleen TaylorlMrs. Rosemary TerrylMrs B TopplelMs Gail TytherleighlMr MJ VandylMichael VidlerlMrs. Ruby WadsleylMrs R WardlMr P WardlMrs C WarlinglMrs C WebsterlDr Derek WhitelMrs. Meg WilliamslMrs A WilliamslMarie WilliamslMr S.A.M WilsonlMrs. Enid WoodlocklAndy Wright lMrs. Gillian Young
QUESTION
Lichen sclerosis “My mother was diagnosed with scleroderma about 25 years ago but sadly died of the disease13 years ago after a very brave struggle. I was always told that it was not hereditary but after a three year battle with Ramsay Hunt disease and recurrent shingles I have just been diagnosed with Lichen Sclerosis. I am 62. Reading up about it on the web a link with Scleroderma has come up. Is it likely that there is a direct link with scleroderma?” There is a body of literature which suggests that lichen sclerosis (LS) is a superficial form of morphoea. It is debated! But there are definite cases of patients with plaque morphoea and LS. Having said this, I think it is likely at least in part to simply reflect a tendency to autoimmunity. I don’t think there are any particular links with systemic sclerosis and so if your patient is worried that having LS makes it more likely that she will get a systemic form of scleroderma, then I think that that is extremely unlikely. If you would like a questions answered, please forward it to our office address or to mike@sclerodermasociety.co.uk
local groups noticeboard for more information on you r local group activity go to our websi te where each local group has its own page. Please contact us if you would like to start a local gro up. We will support you to do thi s and it can be very rewarding. We are particularly in need of a local group in the North East of England.
next date for Essex, London & Kent group is Saturday September 29th @ 2p.m. Ple ase contact me if coming for the first time dollydumplin g23@gmail.com or 01702 344925. Meeting at my home as usual with lunch provided.
Buckinghamshire & Herfordshire Marilyn York Tel: 077 0259 2387 marilyn@sclerodermasociety. co.uk Derbyshire, South Yorkshire Staffordshire & Cheshire Diana Twigg Tel: 01298 24539 diana@sclerodermasociety.co.uk East Anglia Jacky March Tel: 01394 286637 jacky@sclerodermasociety.co.uk East Sussex Rosanna Cliton Tel: 01424 426738 rosanna@sclerodermasociety. co.uk East Yorkshire Lynn Hind Tel: 01482 354312 lynn.hind@hotmail.co.uk Essex, Kent and London Amanda Thorpe Tel: 01702 344925 amanda@sclerodermasociety. co.uk
Contact: Paula Lovelock 02920 304319 paulalovelock@hotmail. com
. cal group co-ordinator Liz Holloway is our lo rmation on local If you need more info cal co-ordinator or groups contact the lo y.co.uk liz@sclerodermasociet
Hampshire Liz and Steve Holloway Tel: 01243 539466 liz@sclerodermasociety.co.uk Lancashire and West Yorkshire Sheila Procter Tel: 01282 429004 sheila@sclerodermasociety.co.uk Merseyside Helen Lingwood Tel: 0151 2801194 jonandhel@sky.com East Midlands Cheryl Darch Tel: 0116 2717180 cheryl@sclerodermasociety.co.uk North Wales Kate A Owen Tel: 01492 515834 kate.owen09@btinternet.com Oxfordshire & Berkshire Melanie Bowen Tel: 01865 515067 melanie@sclerodermasociety. co.uk Powys & Mid Wales Jennifer Ames Tel: 01544 267988 ames60@talktalk.net
South Wales Group Friday 3rd August, 12.30pm at The Plough in Merthyr Road, Whitchurch Village, Cardiff
Scotland Frances Bain Tel: 0131 477 1122 South London Celia Bhinda Tel: 020 8698 6294 celia@sclerodermasociety.co.uk South Wales Belinda Thomson Tel: 02920 612690 belinda@sclerodermasociety.co.uk Surrey Nicky O’Shea Tel: 01483 764524 nicky.oshea@live.co.uk West Sussex Joint contacts: Jo Frowde & Lesley Dodd Jo: 01403 741445 or 07922274167 jo@sclerodermasociety.co.uk Lesley: 01903 753971 lesley@sclerodermasociety.co.uk Wiltshire and North Hampshire Lynn Morton Tel: 01980 863444 lynnm@sclerodermasociety.co.uk
Don’t be a stranger. Join our Forums The online forum is a safe and friendly way to discuss your experiences of scleroderma with other people in a similar position to you. The forum is carefully moderated so as to insure no inappropriate usage takes place. Anyone can read the messages and discussions. If you’d like to post a message, you need to register with your email address. Before any posts appear online, they are checked that the content is appropriate and falls within the forum’s guidelines on usage. Our Scleroderma Society sub-forum is hosted by the ISN (International Scleroderma Network); anyone can join our forum on the ISN website and likewise, you may join any of the other forums hosted by the ISN, such as the main international forum. I’m Amanda Thorpe and 5 years ago, on my 10th wedding anniversary, I was diagnosed with diffuse cutaneous systemic sclerosis which retired me early at 40. I am now disabled, have gastrointestinal issues, myocardial fibrosis which led to serious heart failure, but thanks to a biventricular ICD I’m still here! Like many people with scleroderma I struggle daily to maintain quality of life with chronic pain and chronic fatigue. Thankfully I have total support from my husband Michael! I joined the Scleroderma Society because I wanted to connect with other people with scleroderma and enable them to do so as well. Having enjoyed the benefits of the nonprofit International Scleroderma Network’s forums I wanted to provide a Scleroderma Society sub forum especially for people living in the UK and thanks to Shelley Ensz (ISN President) I was able to do just that. I have always believed that there’s life, good life to be had after scleroderma, it’s just that life looks nothing like you thought it would but that’s not necessarily a bad thing. I want others to believe this and to have access to people and information in a safe environment and the Scleroderma Society sub forum gives people this opportunity. You don’t have to be a member of the Scleroderma Society to use the sub forum in fact you can use any of the forums, all you have to do is join the ISN Sclero Forums which takes a few minutes and hey presto, once you’ve read the forum guidelines, you can post away! Any queries please email me at amanda-thorpe@sclero.org and I look forward to seeing you on sclero forums!
EULAR 2012
This year EULAR the European League Against Rheumatisms annual congress was held in Berlin, with over 15,000 delegates consisting of rheumatologists, health professionals, people with all forms of rheumatic and musculoskeletal conditions, researchers and industry representatives from around the world at the Messe Berlin congress centre. FESCA had a stand in the EULAR Village, which was organised as is customary by the hosting country’s Sklerodermie Selbsthife.e.V with Karl Heinz Schoenemann and colleagues helping visitors with information from FESCA members, we all participated in the ICF project where Lesley Saketkoo managed to make sure she captured the views of every person with scleroderma who was at the congress, just as she did at last years ACR in San Francisco and in February this year in Madrid at the World Systemic Sclerosis conference. At the opening ceremony Raija
Heimonen from Finland collected her award for winning the 2012 Stene Prize to read Raija’s essay go to www.eular.org and click on Stene prize booklet available now where you can read the best of this and previous years entry’s The good news from EULAR 2012 was the amount of sessions and abstracts on SSc far exceeded previous years the bad news is that it was impossible to attend each one between us all Annelise Rønnow from Denmark, Ann Tyrrell Kenedy from Ireland, Edith Brown from UK and Joep Welling from the Netherlands were all representing people with scleroderma. It’s really heartening and exciting to see just how many research projects are being undertaken by various scleroderma centres throughout the world. FESCA president Ann Tyrrell Kennedy spoke of the stigmatism in scleroderma this was a joint session about rare connective tissue diseases looking at different perspectives of scleroderma, lupus and ankylosing spondylitis. Throughout the congress
specialists talked about the many manifestations that systemic sclerosis can cause and the research that is taking place. On Saturday morning Prof Denton spoke of the EULAR Orphan disease program to improve understanding of systemic sclerosis. The EULAR congress papers last edition ran news from EUSTAR about an exciting new project DeSScipher FP7 the full title: To decipher the optimal management of systemic sclerosis, which will involve 150 EUSTAR centres and 10,000 patients, FESCA is one of the 14 partners involved in the project. Main goals are: lA better understanding of the specific problems of systemic sclerosis; lTo improve the outcome of the most important (life threatening) organ complications; lTo distribute this updated information rapidly to physicians and patients There will be more details about DeSScipher when final approval is granted.
Kim
Physiotherapy and Scleroderma How physiotherapy can help Will Gregory is a physiotherapist at the Royal Salford Hospital who specialises in scleroderma. He recently gave a talk at our AGM and conference. He also kindly agreed to turn his talk into an article which we have reprinted here. Physiotherapists help restore movement and function to as near normal as possible when someone is affected by an illness. You may have seen a physiotherapist previously, you may see one in the future, or you may choose to never see one for your scleroderma. However, the physical components of your scleroderma do need to be monitored and can be improved by stretches, application of heat and fitness work. It has been found that about 90% of people with scleroderma complain of musculoskeletal problems at some stage of the disease. A physiotherapist will guide you in your selection of the best physiotherapy treatments for your specific presentation. Equally, general fitness improvements can be made by working with exercise instructors, exercise groups or even by partaking in a physical activity of your choice, e.g. swimming, dog walking, Tai Chi, knitting, etc. To allow you to maintain regular exercises you need to find something that suits you and that you are happy to commit to regularly. Specific stretches to aid problem areas are only effective if performed regularly. There is very little research at present into which are the best physiotherapy treatments for us physios to recommend and you as people with scleroderma to perform. Studies however are now being undertaken and the results are promising. The first area of good results is in the field of finger stretches. A programme of 3-10 daily stretches held for 10 seconds of the fingers was found by 41 participants with scleroderma in Japan to much improve finger movements and function after 1 month and those improvements were maintained at one year. Wax baths are frequently recommended to allow people with scleroderma to heat their hands (or feet!), to soften the skin and to make subsequent stretches more easy. The research backs up this long established practice and will hopefully lead to us being able to follow in Switzerland’s example, whereby all newly diagnosed people with scleroderma are given a wax machine to take home and use for life.
There is also some nice research into stretches to improve mouth opening. Unfortunately the exaggerated facial expression stretches have been found to be of minimal use. Fortunately what was found to work is also manageable at home with minimal expertise, supervision or equipment. A routine of pulling the lips apart sideways with your own hands and then using equipment to hold the mouth maximally open for 15 minutes per night has shown very promising results, even for those people with very restricted mouth opening size. One area yet to have any research performed is hydrotherapy, but this, along with any form of exercise in a swimming pool is anecdotally found to be helpful in stretching, fitness and general wellbeing outcomes. Despite these research findings it is well worth finishing by saying that no two people with scleroderma are the same and what works for one person may not work for others. In summary do try and find a way to keep active with stretches, fitness work and muscle strengthening. Be inventive about your physical activities of choice. Congratulate yourself for your physical functioning activities. And keep moving! Cutting the 30th Birthday Cake at the Scleroderma Society Annual Conference left to right: Richard Dodds, Kim Fliglestone; Susie Hoare; Helena Rozga; Steve Holloway and Mike Rich
30th Anniversary AGM & Conference
The Royal Free Hospital played host to our 30th AGM and Conference on the 14th July. Over 60 people turned out for this very special occassion, some coming from as far afield as Australia. Speakers included Dame Carole Black, Professor Chris Denton and Dr Gerry Coughlan. All the speakers were greeted with enthusiasm by the audience. A raffle was held with the main prize being dinner for four at the Royal College of Physicians - with a Butler. A full report will feature in our next newsletter.
Contacts
Office The Scleroderma Society PO Box 581 Chichester, PO19 9EW 020 7000 1925 info@sclerodermasociety.co.uk Chief Executive Mike Rich 020 7000 1925 07977 487761 mike@sclerodermasociety.co.uk Trustees Kim Fligelstone (Co-Chair) 020 7229 4750 kim@sclerodermasociety.co.uk Richard Dodds (Co-Chair) richard@sclerodermasociety.co.uk Steve Holloway (Secretary) steve@sclerodermasociety.co.uk 020 7000 1925 Susie Hoare susie@sclerodermasociety.co.uk Helena Rozga helena@sclerodermasociety.co.uk Events Calendar calendar@sclerodermasociety.co.uk Helpline The Scleroderma Society operates a free helpline. We cannot offer medical advice, but if you feel you need someone to talk to we can be a good listening ear and will help in any way we can, 09:00-21:00 every day. Tel: 0800 311 2756. Calls are free from UK landlines.
Nurse Specialist Advice Lines These nurse-led advice lines are for general inquiries only, not emergencies. If the nurse is unavailable, you may need to leave a message so he/ she can call you back. Liverpool Aintree University Hospital Jan Lamb 0151 525 5980 bleep 2231 Bath Royal National Hospital for Rheumatic Diseases Sue Brown 01225 428823 Belfast Ulster Hospital Audrey Hamilton 02890 561310 Dundee Ninewells Hospital Steve McSwiggan 01382 633957
Manchester Hope Hospital Liz Wragg and Catherine Lambe 0161 206 0192 Newcastle Freeman Hospital Scleroderma queries: Karen Walker 0191 223 1503 Pulmonary hypertension queries: Rachael Crackett / Julia De-Spyza 0191 213 7418 Portsmouth Queen Alexandra Hospital Paula White / Julie Ingold 02392 286935 Carer Support Group The Carers’ support group is run by Michael Thorpe. For more information, please contact Michael. 01702 344 925 michael@scleroderma.co.uk
Leeds Chapel Allerton Hospital Elizabeth Tyas 0113 3923035 London Royal Free Hospital Scleroderma queries: 020 783 02326 Pulmonary hypertension queries: 020 7472 6354 London Royal Brompton Hospital Respiratory (lung) queries: Lucy Pigram 07758 8943 175
Fancy a challenge in this Olympic year. why not join our Thames Path Challenge Team and join us in a fundraising walk along the Thames (50 or 100km) to raise money for the Society. Contact: Mike (who is doing the challenge) mike@sclerodermasociety.co.uk
Alongside the ISN Forums the Scleroderma Society have also set up a new and complementary community powered by HealthUnlocked. If you are a Facebook user you may already have seen advertisements for the forum pop up on your page. Why not give both the forums a go. Have a look round and meet and get support from many other people with scleroderma.
www.sclerodermasociety.org.uk info@sclerodermasociety.co.uk 020 7000 1925