Hot news 2014 Vol 1

In this issue...

World CongressPage 4

FundraisersPage 10

Salford UpdatePage 5

Doc SpotPage 6 & 7

Have you seen the new version of our SO RARE card? We have changed the picture to a thermal image of a hand during

a Raynaud’s attack. We hope you like it!

Issue No. 126 Volume 1 2014

www.sclerodermasociety.co.ukCharity Reg. No. 286736

Thermal image of a Raynaud’s attack

Working in Partnership

SORESWOLLENFINGERS

REFLUX &HEARTBURN

RAYNAUD’SSYNDROME

Scleroderma is SO RARE but the early warning signs are there.These 3 symptoms are often the first clues.

If a patient presents with the three symptoms shown above, request a blood test and capillaroscopy.

For more information:Raynaud’s & Scleroderma Association 01270 872776

Scleroderma Society 020 7000 1925

DATE FOR YOUR DIARY!The RSA’s annual conference will be held on the 6th September, 2014, at the MercureHotel, Chester. There will be more information in the next edition of Hot News and on

our website soon. Contact [email protected] or phone the office on 01270 872 776if you are interested in attending and want to secure a place.

Hot News HOT NEWS SPRING_Vol1-09.qxd 03/04/2014 08:26 Page 1

Firstly, to all those who continue tosupport the RSA and the work we aredoing, our heartfelt thanks are due – yourcontinued support is hugely important.Welcome to all new members and thanksto existing members who have renewedtheir subscription with the RSA, includinga number who have taken lifemembership. To those who work tirelesslyfor the good of the charity and for thosewho benefit from its work, including knownand anonymous donors, contributors andfundraisers who knit, bake, walk, run, singand a myriad of other activities, THANKYOU!

Raising awareness of Raynaud’s andscleroderma to make sure more peopleknow about living with such conditions is akey role of the charity and those whosupport it. The RSA team has listened tofeedback from members and aftersubsequently reviewing the content of HotNews, changes have been made. Docontinue to let us know what you think byphone, letter, email or on Facebook orTwitter!

Raynaud’s can be miserable – mild orsevere, it can be frightening. Raynaud’sAwareness Month (RAM) 2014 involvedradio interviews and various newspaperarticles about the condition – thanks to allthose who made a special effort inFebruary! The RSA continues to workmore closely with the Scleroderma Societyand we were extremely pleased to use‘Get Your Gloves on for Raynaud’sAwareness Month’ for the first time in2014. Other countries had used theirslogan last year …and we thought it wasperfect for the UK’s RAM. Thanks are dueto the Scleroderma Society with whom weare working with to ensure that, in future,we don’t duplicate precious time spent bythose kind and dedicated clinicians whohave, historically, helped each charityseparately. The British Society ofRheumatologists (BSR) event in Liverpoolthis year will see both the Raynaud’s &Scleroderma Association and TheScleroderma Society sharing a stand,

something that is welcomed by UKrheumatologists and clinicians.

World Scleroderma Day is held on the29th June - please let us know what youand/or your hospital are planning to do toraise awareness. The RSA will becelebrating World Scleroderma Day at theRoyal National Hospital for RheumaticDiseases in Bath this year with Dr JohnPauling and members of the team on 3rdJuly, 2014. People will be welcome fromacross the UK and further details will beavailable on the RSA website(www.raynauds.org.uk). Call the RSAoffice if you are interested in comingalong.

The RSA Conference in 2014 will be heldin Chester on Saturday 6th September.We’d love those of you who can attend toput the weekend in your diaries. ProfessorDenton, our Vice President, has kindlyoffered his support. So, whether you arejoining us for the first time, the 30thtime…or somewhere in between, you willlearn about current ways of managingconditions as well as making some newfriends. Day delegates or those planning aweekend including Friday and/or Saturdaynights will be welcome. We have includeda conference booking form on the back ofthe carrier sheet on which your address ison. You can use this to book a place at theconference, however we would be mostgrateful if you can phone the office andpay by card. Not only does this save ustime and resources, it also saves you astamp!

In this edition you will find a piece on theSystemic Sclerosis World Congress onpage 4, held in Rome in February.

The charity is running our annual raffle –the star prize is a voucher kindly given byCumbrian Cottages. We’d be grateful ifyou can sell the tickets, or give them tosomeone who will do this for you and sendthe proceeds to the RSA. However, wealso respect that you may not wish to takepart. If that is the case, please re-cyclethem locally. We are distributing them withthe newsletter as it is the most cost andtime efficient way, but don’t feel pressured.Alternatively, if you need more, contact theoffice and we will send you some!

PLEASE let us know if you are a UK taxpayer for Gift Aid purposes so the charitycan make more of the resources you sokindly share with us….and now let’s talkWills - Although this is something wemight feel uncomfortable talking about, somany people wish to give something tocharity yet are unsure which one. If youcan encourage anyone in that position to

consider the RSA, we’d be most grateful,thank you.

As you know, charities generally havebeen subject to changes over the last fewyears and the Charities Commission andHMRC are two of the agencies with whoserules we at the RSA must abide! Makingour work ‘transparent’ in times of changeremains vital. A step in the direction ofusing our limited resources better hasbeen setting up online banking facilitieslast year. The RSA encourages supportersand members to renew 'online' wherepossible, to help us process things moreefficiently ‘back at the ranch’ - so specialthanks are also due to those who wereable to make use of the online bankingfacilities that the RSA now offers. Now wecertainly don't wish to interfere with theways in which you choose to send fundsto the charity but we thought you might beinterested to hear that each cheque takesapproximately 9 minutes to process (6minutes on initial administration and afurther 3 to bank to the accounts and ofcourse a trip to the bank)…which is whywe’ve been ‘pushing’ online options formembership and purchases from the RSATrading company. At the end of the day,whichever way you choose to pay anddonate, be assured that your support isvery much appreciated!

A word about the RSA TradingCompany…you may need to be remindedthat every penny of profit from the ‘onlineshop’ is donated to the charity. In 2013, aswe began supplying the overseas marketusing a new, purpose built website inAugust, the shop donated more to thecharity than the previous year. We knowwe can do better and we’d like to increasetrading in the UK and abroad. Please let usknow if you come across products ofparticular use to Raynaud’s orscleroderma patients…and those that areuseful to everyone in cold weather andwe’ll investigate whether it is feasible tosell them in the shop – thank you!

What a wet time this winter has proved tobe! No arctic winds and sub-zerotemperatures but rather, relentless rainand wind – so those with Raynaud’s areready to embrace the longer days andwarmer temperatures that I trust are inprospect for spring and early summer!Enjoy the read…

Best wishes

Elizabeth BevinsChief Executive Officer

Elizabeth Bevins

Chief Officer Update

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NewsWe are delighted to be running our 2014 Raffle!

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The main prize this year is a £450 voucherfor Cumbrian Cottages to be used for astay at any property featured within theirextensive portfolio. To tempt you intobuying a ticket, you can have a look attheir properties here: www.cumbrian-cottages.co.uk

Other prizes include a night at the MercureHotel, Chester, M&S vouchers,paintballing vouchers, a Portmeirion cakestand, Portmeirion trinket box and a mealfor two at the Rembrandt hotel, London.

We have included a couple of books ofraffle tickets with this newsletter, for you toeither buy yourself or to sell on. Weappreciate that you might not have thetime or health to sell these however, we

can save on postage costs by includingtickets with your Hot News. As you canappreciate, being a small charity, we needto save on costs wherever possible. If youcannot sell the tickets, please either passthem on to someone who can or put themin the recycling bin.

The tickets sell for £1 each. The buyer fillsin their details on the slip, and keeps themain part of the ticket. You post the stubwith the buyer’s information on the back tous, with a cheque for the money, madepayable to “RSA.” Don’t worry if you don’tsell all the tickets, please just postwhatever you manage to sell back to us. Ifyou would like more tickets to sell, pleaseget in touch with head office and we wouldbe delighted to post more out to you.

The closing date for the raffle is Friday27th June. All ticket stubs will be enteredinto the draw and Fiona Bruce MP will pullout the winners on the 4th July when wecelebrate World Scleroderma Day. We willthen contact all winners directly, andannounce the full list of winners in the nextedition of Hot News.

Thank you to everyone who enters andmost importantly, good luck!

!

February was Raynaud’s Awareness Month!The team at Head Office were working frantically to try and spread awareness ofthe massively underdiagnosed Raynaud’s phenomenon. We spread the wordvirally on our Facebook and twitter pages and asked our followers to share theposter (on the left hand side) using #ram and #getyourgloveson. We got a lot ofsupport and even got Dr Hilary Jones to mention it on his twitter account. Lizgave radio interviews to BBC Radio Stoke and Pure Radio, amongst others, andthe Mirror ran an article featuring Jenni Falconer.

We are still looking for support despite Raynaud’s Awareness Month being over.If you would like to generously donate, you can do so by texting RAMS14£amount to 70070. The money donated will either be deducted from your creditor be included on your next bill.

Thank you for your support.

World Scleroderma day is held on 29th June and aims to

highlight scleroderma for all of those who struggle with it. It is also a day tocelebrate Paul Klee, the gifted Swiss artist who’s work was strongly influenced byhis systemic sclerosis. He died on 29th June, 1940.

FESCA held the first World Scleroderma day in 2009, the poster from this isshown. FESCA campaigns for a world in which equal rights, treatments, and careare offered to people with scleroderma, and in which such rare diseases, are notforgotten, but afforded the consideration and attention of other more commondiseases.

We are going to celebrate World Scleroderma Day on the 3rd July in Bath, at theRoyal National Hospital for Rheumatic Diseases. We will be holding aninformation sharing event where you can drop in, have a chat, ask questions andmeet others with scleroderma. If you would like more information about this day,please keep an eye on our website, social media pages or contact head office.


Rome

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Rome became the focus of thescleroderma world for a few days inFebruary this year, with the cliniciansconference and the ‘patient’ conferencerunning concurrently. Members of themedical fraternity with an interest and/orspecialism in various aspects ofscleroderma, and the Raynaud’sassociated with the disease, descendedon Rome – not just from across Europe,but across the globe. The passion anddedication of those involved was almostpalpable!

The Federation of European SclerodermaAssociations (FESCA), of which the RSA isone of the 2 member organisations in theUK, played a key role in the Congress andafterwards held its AGM. FESCA’spresident, Anne Tyrrell-Kennedy,contributed to the opening ceremony ofthe Scientific Programme presenting ‘ThePatient Perspective’. The scientificprogramme for medical professionals andthe patient programme ran separately,with the patient conference benefitingfrom the input of experts from Europe,America, Canada, Australia and SouthAmerica. The patient audience, comprisedof people aged from about 20 yearsupwards, mirrored the multi-cultural mix.Fortunately for the RSA, the SclerodermaSociety and those whose mother tongue isEnglish, both conferences wereconducted in English – includingpresentations, discussions and questionpanels, although translations services inFrench and Italian were available to thoseattending the patient programme.Following a round table discussionbetween patient organisations to whichthe RSA contributed on Thursday, thecongress began in earnest on Friday withpresentations, workshops and a postersession covering various aspects ofscleroderma, showcasing thecollaborative work of medical teams fromacross the world.

Medical experts gave presentations on avariety of topics – Professor Van Laar (UK)on ‘Why did I get scleroderma and will I becured?’ and Alan Tyndall (Switzerland)‘Transplants of different kinds – are theyfor me?’ presented early interpretationsfrom the latest research into stem celltherapies - about which the RSA will learnmore later in the year. Oliver Distlershared insights about why sclerodermapatients find breathing difficult – focussedon the fibrosis of the lung reducingcapacity for oxygen transference. JanetPope (Canada) provided medicalinformation on the digestive process; PaulBiffa from Salford presented ‘Hand andface exercises’ and Italy’s Roberto Rozzagave an insight into dental techniquesused in his country.

The patient perspective and tips on how tomanage various aspects of sclerodermawere given by Kim Fligelstone about lungissues, Susie Hoare (SclerodermaSociety) on tips for those with gut andintestinal problems; pregnancy andsexuality from colleagues in Italy, theNetherlands and Sweden; breakoutsessions on Juvenile Scleroderma,breathing exercises from physiotherapistcolleague Jadranka Brozd from Croatiaand a ‘men only’ session led by Danishcolleague, Kent Krarup. Different patientperspectives on transplants were given byGabrielle Verzi (Italy) and Jessica Thonen(Netherlands). Annelise Roennow(Denmark) gave tips on useful equipmentfor those with scleroderma.

Saturday’s session began with anexplanation of the new EULAR-ACR(European League Against Rheumatismand American College of Rheumatology)classification of Systemic Sclerosispublished late last year. Variousclassifications have followed originalproposals in 1980 and Frank van denHoogen (Netherlands) explained theimproved sensitivity and specificity of thenew one. It includes the three ‘hallmarks’of systemic sclerosis (SSc) (fibrosis of theskin and/or internal organs; production ofcertain autoantibodies and vasculopathy).However, one criterion is sufficient (andgiven a high weighting) for a classificationof SSc – skin thickening of the fingersextending proximal to themetacarpophalangeal joints. ProfessorDenton (UK) talked about new treatmentsin scleroderma at the same time ascolleagues from France, Spain and Italy

talked on the same topic in breakoutrooms, in their own languages. MarcoMatucci-Cerinic (Italy) gave the Italianperspective on treatment of digital ulcers(DUs), and Australian nurse, BarbaraGemmel gave tips on care of ulcers, whilstGrazia Tassini (Italy) and Laszlo Czirjak(Hungary) gave a patient perspective. Thefacial camouflage workshop was wellattended and the presentation by AntoineFauconneau (France) gave information onlasers and corrective make up. Finalsessions addressed coping withscleroderma – the psychological aspects(Brett Thombs, Canada), fatigue (JanetPoole, USA) and a carer’s perspective(Robyn Simms, Australia).

We plan to share further information fromdifferent aspects of the congress in moredepth in later editions. In the meantime,do look up the work of the clinicians whoare working in areas of particular interestto you and share your thoughts throughHealthUnlocked, by email, facebook,tweet us…or write us a letter. A flavour ofa presentation given is below….

Janet L. Poole, PhD, OTR/L, OccupationalTherapy Graduate Program, University ofNew Mexico, gave a really interesting talkabout managing fatigue.

Janet used an “energy bank account”analogy. ‘Overspend’ and it results infatigue!

She explained the importance of goodnutrition, establishing good sleep habits,remaining active but taking frequent rest.Good posture, using household gadgetsincluding, if possible, a dishwasher andorganising storage so that frequently useditems are to hand. She encouragedpeople to prioritise tasks and ask oneselffundamental questions such as “do thosesheets really need ironing?”

So, collaborative research and analysis isdefinitely benefitting our understanding ofthe triggers and mechanisms involved indeveloping scleroderma. Together withthe announcement of a new classificationof the disease to aid specific research, weare looking at better management NOWand in the future. The key message is still‘early diagnosis means bettermanagement and quality of life’…which iswhy raising awareness and lobbying forbetter understanding of scleroderma andautoimmune disease generally remains soimportant.

3rd Systemic Sclerosis World Congress Rome, Italy February 2014


Nutritional Studies UpdateSalford Royal Hospital is a large referralcentre for patients with systemic sclerosis(scleroderma) as well as patients withcomplex nutritional problems. In addition,Salford Royal is academically linked to theUniversity of Manchester. It is thisarrangement that has enabled theRheumatology and GastroenterologyDepartments to work together to studynutritional and gastrointestinal problems inpatients with systemic sclerosis.

Approximately 90% of patients withsystemic sclerosis develop problemsrelated to their oesophagus, stomach orbowels (gastrointestinal tract). Whensevere, these may lead to weight loss.Some patients develop problems whichmeans that they require long-termintravenous feeding in order to meet theirnutritional needs. Despite this, little isknown about why some patients developmore severe nutritional problems or whysome patients have more severegastrointestinal symptoms.

Current projects, kindly supported by theRaynaud’s and Scleroderma Association,are being undertaken by Dr Harrison, aGastroenterology trainee, along side Dr

Lal and Professor McLaughlin,Gastroenterology consultants, andProfessor Herrick, a Rheumatologyconsultant. These projects are outlinedbelow:

‘Our first study reviewed the use of homeintravenous feeding. We found that over a22 year period, 25 patients with systemicsclerosis commenced home intravenousfeeding under the supervision of SalfordRoyal. All of these patients had significantgastrointestinal problems and many hadpreviously failed to tolerate tube feedingdirectly into their stomach or small bowel.We found that home intravenous feedingwas relatively safe when used by patientswith systemic sclerosis. However, mostpatients needed help, from a nurse or theirfamily, to connect and disconnect theirfeed. Therefore, we were able to concludethat home intravenous feeding is a safeoption for patients, with severegastrointestinal problems, who are unableto consume sufficient food to maintain theirweight.

Our second study, which is ongoing, aimsto identify the proportion of all patients withsystemic sclerosis who have nutritional

problems and to look for featuresassociated with the development of thesenutritional problems. This study involvesthe assessment of each patient’s diseasestatus, gastrointestinal symptoms andnutritional status. To-date, 170 patientshave been recruited and are currentlybeing followed up. Provisional resultsshow that, when using an approvedscoring tool for nutritional risk, 12% ofpatients would be considered to be at highrisk of malnutrition and 14% at mediumrisk. A more detailed analysis of thesepatients’ characteristics is currently on-going and will allow the identification ofany features more likely to be present inpatients with a low weight or weight loss.

Our third study aims to investigate therelationships between stomach relatedsymptoms, the speed at which thestomach empties, feelings of fullness andproblems in the involuntary (autonomic)nervous system. This study started inJanuary 2014.

We are very grateful to everyone who haskindly given their time to participate in ourresearch.’

Researchers see the Light over New Treatment!

Dr Graham Dinsdale and researchers atSalford Royal NHS Foundation Trusthave tested a new way to treat adisfiguring skin condition, in a studyfunded by the RSA.

Telangiectases are knot-like clusters ofblood vessels on the skin that can occurin 30 to 50 per cent of patients withsystemic sclerosis, a potentially seriousand incurable auto-immune condition

that affects connective tissue.

Telangiectases tend to occur on theface, neck and upper limbs and cancause psychological issues for patients.

Currently, doctors use laser treatment toblast the telangiectases and destroythem but this treatment can be painful atthe time and result in bruising afterwardsso researchers have been looking for analternative because of this.

Salford Royal is one of only a handful ofTrusts in the UK specialising in systemicsclerosis, also known as scleroderma,and Consultant Rheumatologist ArianeHerrick, also Professor of Rheumatologyat The University of Manchester, is aleading UK expert in the condition.

As part of the Trust and University’s widerange of studies to improve care ofscleroderma patients, researcherstested using intense pulsed light (IPL)instead of laser treatment-IPL, being a

method that is used cosmetically fortreating birthmarks and for hair removal.

Their pilot study treated 19 patients withtelangiectases, using IPL on one side ofthe face and laser treatment on theother. They had three treatments overthe course of eight weeks before theresults were analysed using close-upphotographs and specialist imaging.

The research showed that the effectswere roughly comparable but IPL hadfewer side effects.

Salford Royal Rheumatology researcherDr Dinsdale, who is also a ResearchAssociate at The University ofManchester, said: “While this was only asmall-scale pilot study, it does suggestthe potential for an alternative, lesspainful, treatment for telangiectases. Wewill continue to do all we can to find newand better treatments for patients withsystemic sclerosis, which is a veryserious and debilitating condition.”

Salford Royal Hospital News

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Doc Spot

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Professor Chris Denton FRCPConsultant Rheumatologist,

Royal Free London, NHS Foundation Trust

If you have a question you would like Professor Chris Denton to answer,

it to Head Office or [email protected] with Doc Spot in the subject heading. Thanks!

Q: What is the cause of Raynaud’s?

A: Raynaud’s phenomenon results from an excessive spasm of the blood vessels in the extremities (e.g. fingers, toes, ears etc.). Thisspasm is triggered by cold or emotional stress, which can be a normal response. It causes symptoms in up to 1 in 10 people, so isvery common, but usually not associated with any other disease (primary Raynaud’s phenomenon). It probably is caused bycomplex alterations in the balance of chemicals that narrow blood vessels and those that widen or relax the muscle in the bloodvessel wall. Other mechanisms may include an increased sensitivity of nerve endings in the blood vessel wall or damage to the smallvessels.

Q: I have read [in previous issues of Hot News] that one should have an ANA (anti nuclear antibody) blood test if your Raynaud'sbecomes severe or if you develop Raynaud's after the age of 40. If this comes back positive does it always mean that you havescleroderma or can you have positive ANA and not develop scleroderma?

A: Most patients with Raynaud's phenomenon have "primary Raynaud’s", which is not associated with any underlying disease.Some patients do develop a related condition, such as scleroderma or another rheumatic or connective tissue disease (secondaryRaynaud’s). Some cases of Raynaud’s phenomenon have positive ANA and this is associated with increased chance of developingan associated disease over subsequent years, but many patients do not develop scleroderma. Research studies suggest only about10% of such cases progress to scleroderma.

Q: Are ulcers a result of Raynaud's, scleroderma or both? Also, am I destined to get them from Raynaud's?

A: Ulceration, or breakdown of the skin over the fingertips or over the knuckles, is a complication of scleroderma and some otherforms of connective tissue disease such as vasculitis but does not usually occur in cases of Raynaud’s in isolation, called primaryRaynaud’s. This is probably because the blood supply between attacks in primary Raynaud’s phenomenon recovers enough to keepthe skin healthy.

Q: My doctor has diagnosed me with Raynaud's. Do I need to see a consultant and if so what kind?

A: It is important to clarify whether this is primary or secondary Raynaud’s, the latter associated with underlying diseases such asscleroderma. Most often a rheumatologist is the best person to see as most of the associated diseases are rheumatic, such as lupusor scleroderma. Sometimes vascular surgeons or dermatologists may have a special interest in Raynaud’s.

Q: Can Raynaud's affect the tongue? My tongue swells up and goes blue at times and I find it difficult to talk. It feels as though mytongue is shrinking.

A: It is certainly possible for the tongue to be affected and this seems to occur in primary Raynaud's or in association with connectivetissue disease. Blood vessel spasm in Raynaud's can involve any of the vessels that respond to or regulate temperature and thisincludes the tongue (it is an important cooling device in dogs!). Raynaud's therapies may improve these symptoms.

Q: The tops of my hands are very itchy and I get tiny hard spots, which are not visible but I can feel them...also the tops of my feet,top of big toe and around my ankles are very itchy too - no spots but sometimes it looks like I have a nettle rash on the top of mytoe and also on the backs of my wrists. The itching is always on both sides at the same time. Any ideas please?

A: This symptom sounds like urticaria, which is the result of release of histamine and other factors in the skin. It can be provoked bytemperature change, scratching or sometimes in association with poor circulation. It can be helped by anti-histamine creams ortablets (although these may cause drowsiness). Some connective tissue diseases are associated with urticaria and so if this is asevere and persistent problem you should consult your doctor as a specialist dermatology or rheumatology referral might beappropriate.

Q: Why are erythromelalgia and Raynaud’s connected when they appear to show such opposite symptoms?

A: Erythromelalgia is a medical condition in which blood vessels dilate and lead to burning red discomfort and intolerance of warmenvironments. This can occur after a Raynaud’s attack in some cases and both disorders are due to excessive response of theregulatory blood vessels to change in temperature.

Q: Does anyone know if there has ever been any research conducted into the use of artificial sweetners (aspartame) and Raynauds?I just saw a comment about it causing autoimmune issues. I have used artificial sweetner most of my life and was just wondering.

A: Aspartame may cause blood vessels to narrow, like caffeine and some other chemicals. In theory this could worsen Raynaud’sphenomenon but there is no major evidence to support this and I am not aware of specific research into this area. Many substancescan make symptoms worse and if individual sufferers notice this then they should avoid them but at present there is no officialconcern about aspartame of any other artificial sweeteners being harmful.


Doc Spot

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Q: Have any complementary therapies been proven to be successful for Raynaud’s?

A: 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. Unfortunately, there have been very few clinical trials but they do seemto show that although initially the patients claim some improvement, after about a year many patients stop the treatment becausethey feel no benefit or it takes up too much time.

Q: I have Raynaud’s and my hands swell up, am I developing scleroderma?

A: Most people with Raynaud’s do not have scleroderma - and swelling of the hands can be normal in Raynaud’s that occurs inotherwise healthy people (primary Raynaud’s). However, you should discuss this with your doctor as you may require tests to lookat the blood vessels around the finger (nailfold capillaroscopy) and blood tests for autoantibodies. If these tests are normal you arevery unlikely to have scleroderma.

Q: I saw a Rheumatologist recently about my possible Raynaud's, dry eyes and dry mouth. I have difficulty in swallowing. He hasreferred me to a Gastroenterologist and an ENT specialist about my swallowing problems. He has also suggested to my GP that heshould put me on a drug called Thymoxamine for my peripheral circulation. Is this a common medication for Raynaud's?

A: Thymoxamine is one of a number of drugs that can reduce blood vessel spasm. It was originally developed for high bloodpressure and is in a class of drugs called "alpha adrenergic blockers" that block some of the effects of adrenaline. It is sometimesused in Raynaud's although other agents such as nifedipine or losartan are also prescribed. It is often necessary to try severaldifferent medications to find one that works and does not cause significant side-effects. Many of the common side effects relate tolowering of blood pressure.

Q: I have Raynaud's and scleroderma and have been on the same medication for some time. Recently, I have developed very painfulmouth ulcers and wonder if there is a connection? I have read all the patient information leaflets but I can't find any reference tomouth ulcers.

A: Mouth ulcers are common but can occur as a side-effect of some medications given for scleroderma such as methotrexate andother agents. I would recommend discussing this with your doctor – you may need a monitoring blood test and sometimes mouthulcers, due to methotrexate, can be reduced by taking folic acid supplements. However mouth ulcers can occur for other reasonsor as part of an underlying connective tissue disease.

Q: If people with Scleroderma have been taking Omeprazole and similar medication for many years, is there cause for concern andshould they stop taking as suggested to test if they still need them ?

A: Although long term use of proton pump inhibiting drugs like omeprazole does have some potential side effects, the benefit ofbeing on these treatments for scleroderma patients generally outweighs any risk. This is quite different from the widespread use ofomeprazole in people without scleroderma. Acid reflux in scleroderma can otherwise lead to scarring or stricture of the oesophagusthat may require surgery or might worsen lung fibrosis. Nevertheless, it is sensible to have routine blood tests including magnesiumlevels checked, especially if your doctor is concerned about possible side effects.

Winter Fuel AllowanceWinter Fuel Allowance is a non-meanstested benefit. You only need to be aqualifying pensioner to receive it and itis paid whether you need it or not.

A petition has been set up to call onthe government to extend the winterfuel allowance to anyone who suffersfrom conditions that are made worseby cold weather, such as Raynaud’sand scleroderma. Patricia Murray, amember of the RSA, who set up thepetition is looking for 800 signaturesand once these are gained she

will send the petition on to thegovernment. At the time of going toprint, only another 113 signatureswere needed. If you agree that thewinter fuel allowance should beextended to those with illnesses thatget worse in cold weather, please signthe petition at this link:

https://you.38degrees.org.uk/petitions/w in te r- fue l -a l l owance - fo r- the -disabled-and-vunerable

Thank you!


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Psychological Impact of . . .

Scleroderma brings with it a great deal of clinical and medical issues. The immediate concentration is clearly onyour physical health however, what is often ignored or overlooked is the psychological impact of scleroderma andthe wider affect that it can have on your life. Whether that be the impact of fatigue on everyday activities or theeffect on your ability to work, it is vital to recognise this side of living with scleroderma. The Scleroderma Societyattended a seminar at Sint Maartenskliniek Hopsital in Nijmengen, The Netherlands, and they kindly provided uswith these highlights...

There is some evidence that Cognitive Behavioural Therapy is helpful in long-term conditions. So what isCBT?

Cognitive behavioural therapy (CBT) is a form of talking therapy that can help you manage your problems bychanging the way you think and behave. CBT cannot remove your problems but it can help you manage them ina more positive way. It encourages you to examine how your actions can affect how you think and feel. Talkingand changing your behaviour can change how you think (cognitive) and what you do (behaviour). This can makeyou feel better about life.

When is CBT used?

CBT has been shown to be particularly helpful at tackling problems such as anxiety, depression, post-traumaticstress disorder (PTSD) and eating disorders. Unlike other types of talking treatments, such as psychotherapy,CBT deals with your current problems, rather than focusing on issues from your past. It looks for practical waysto improve your state of mind on a daily basis. CBT can also be used to treat people with long-term healthconditions, such as arthritis and irritable bowel syndrome (IBS). CBT cannot cure the physical symptoms of thesehealth conditions, but it can help people cope with them better. Source: NHS Choices

Getting in a SPIN

SPIN is a project based in Canada but expanding across the USA and to parts of Europe. SPIN stands forScleroderma Patientcentered Intervention Network. Over the next few years, the SPIN project plans to develop aset of psychosocial interventions, which are accessible, cost-effective and can be delivered on an on-going basisto people living with scleroderma. To make the interventions cost effective and available to everyone, the projectplans to make them available online, and eventually, they will be available through patient organisations such asthe RSA and Scleroderma Society. SPIN is initially concentrating on emotional distress, hand function, bodyimage and self-management. This is a potentially important intervention that could have a positive impact on thelives of thousands. One of the problems with rare diseases such as scleroderma is that there is typically noaccess to psychological interventions that are relative to the specific disease. SPIN will change this. We hope thatit will be possible for UK patients to sign up for SPIN as soon as possible. If you would like to sign up you willneed to do this via your hospital rheumatologist. Why not ask them about SPIN and whether they are gettinginvolved at your next appointment?

What do patients want?

Joep Welling from the Dutch patient group NVLE asked a question that we all need to think about: what dopatients want from their healthcare providers? Fundamentally, Joep felt that what patients really wanted was thecare and attention that they need. This involved proper listening on the part of the health care provider and aboveall, time. Patients wanted unrushed time where they felt that they were getting sufficient attention and where theyhad the space to ask necessary questions. They also wanted to be kept well informed of what was happening tothem and the treatment as well as the other options that lay ahead.

Do you agree with Joep? What do you want from your health professional? We are all very different and some ofus do not like asking questions. How are you in the doctor’s office, full of questions or quietly waiting forinformation?


09

. . . SclerodermaDisfigurement can be a central part of scleroderma. This does not just affect the face but also the hands and the neck.This change in appearance has been reported as a major cause of stress and studies have shown that, especially inwomen, changes in appearance have led to a significant reduction in self esteem and an increase in dissatisfaction withbody image - factors which are related to both depression and anxiety.

In studies of younger people and those with telangiectasia, there was a greater reported level of social discomfort. But itis not just about appearance; there are a range of other factors that impact on the psychological health of people withscleroderma. Uncertainty about the future, the fear of or worry about disease progression, concern about becomingdependant upon others or becoming physically disabled are all part of systemic sclerosis. However, it is vitally importantthat people with scleroderma do not become overwhelmed by their concerns for the future as this may have a real affecton the quality of the life that they are living. Over the next couple of years, the RSA and Scleroderma Society will belooking at the issue of living with scleroderma and how to cope with many of the day-to-day issues that come with thedisease. If you have any particular issues that you would like to see developed or discussed, please let us know [email protected] or call the office.

Lets talk about fatigue.

Christina Bode of the University of Twente presented international data that showed that fatigue was clearly elevated inpatients with scleroderma and that it was the symptom that had the single largest impact on people living with the disease.However, she also stated that fatigue was overlooked in many cases and suggested that this was because there were noclear causes for the fatigue and no evidence based treatments available.

She also suggested that because fatigue was invisible there was often social disapproval or lack of understanding, whichwas sometimes seen as laziness or as an excuse. These conclusions certainly fit with some recent research done by theScleroderma Society that showed that only 1% of people felt that they had not been affected by fatigue (93% hadexperienced fatigue and 6% were unsure). When asked whether their health professionals had suggested ways of helpingwith the fatigue, only 31% said that they had been given support but almost 70% had not.

We asked people to mark on a scale of 1 to 10 how much fatigue had impacted on them. The average score was 7 outof 10, with almost 45% of respondents saying that fatigue had an impact of 8, 9 or even 10 out of 10.

The survey also pointed to the problem of other people’s attitude to fatigue. Some stated that while those close to themunderstood, the majority of people showed little understanding and were sometimes intolerant.

Linda Kwakkenbos is a Dutch psychologist who has specialised in the impact of scleroderma. She has become the co-ordinator of theSPIN programme, an innovative project which is planning to develop online and distance interventions to support people withscleroderma. Linda recently organised a seminar at Sint Maartensklinienk in Nijmengen looking at the impact of depression, fatigue andwork capability.

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10

Fundraisers

If you feel inspired by these wonderful fundraisers, and would like to fundraise on our behalf, please get in touch! We can support you throughout your fundraising endeavour

and every penny raised truly counts to us.

Thank you to all of our wonderful fundraisers, we truly appreciate each and every one of you!

Paul West and his chums walked the Malvern hills on a very coldNovember day with no tops on to raise awareness of howdebilitating Raynaud’s can be. This was in memory of his mum,Christine, who sadly died with Raynaud’s and scleroderma in2010 and for his partner Julie, who has just been diagnosed withRaynaud’s. They raised an amazing £2,189. We hope you haveall managed to warm up again!

Mary and Brian Connellycelebrated their GoldenWedding Anniversary andinstead of presents theyreceived £310 of donation forthe RSA. Congratulations onyour wedding anniversary!

Samantha Lancaster and JonCulshaw hosted a ten pinbowling night in memory of IanPowell (pictured with his wifeKaren). They raised atremendous £1,205 and weresupported by the RAF CollegeCranwell Station.

Karen Cox, for the second yearin a row, ran the Clarendon halfmarathon in memory of hermum, who sadly passed awayfrom scleroderma in 2012. Sheraised a brilliant £601.

Carla Matthews andKaren Landles ran theBaxter’s loch NessMarathon and raised£105 for the RSA.

Thank you also to all of the following: Exeter Quilters, Janis Jackson, June Law, Den Griffen, Joshua Lochlan, Ann Wishart, Misty Vie, Sue Edser, Susan Bloomfield,

Paul Barker, Peter Fuller, Peter Wright, Roy Hugman, Martin Scully, Claire McKenzie and pals Laura and Hannah, Penny Paterson,Sarah Forrester and friends Neil, Rachel and Emma, Elizabeth Roberston and her niece Jessica

Kirandeep Ghataorhe raised a massive £3,275 forthe RSA in memory of her mother, who sadlypassed away from scleroderma 20 years ago.

Emma Finney, who wasdiagnosed with Raynaud’s atthe tender age of 12, climbedMount Kilamanjaro in Octoberand raised a massive £1,444for the RSA.

Photo: Sussex Sport Photography

Louise Flanagan rana Santa dash inLiverpool and raised £270

Amy Lomax ran a whopping 13 marathons in 2013, inmemory of her Auntie, whohad Raynaud’s. She raised atremendous £1,097.


11

Contacts

If you would like to be a local contact, please get in touch with us!

The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice.The nurses who run the advice lines also have very busy schedules and therefore it is likely you will get an answerphone messagewhere you can leave your details for the nurse to get back to you.

NURSE ADVICE LINES

Royal Free, London Sally Reddecliffe & Adele Gallimore 020 7472 6354(For Pulmonary Hypertension Enquiries)

Royal Free, London Specialist Nurses 020 7830 2326

Bath Sue Brown 01225 428 823

Chapel Allerton Lynne Lister 07425 178 191

Manchester Specialist Nurse Team 0161 206 0192

Leeds Specialist Nurse Team 0113 3923 035

Liverpool Jan Lamb 0151 529 3034

Newcastle Upon Tyne Karen Walker 0191 223 1503

Belfast Audrey Hamilton 02890 561 310

Portsmouth Paula White & Julie Ingall 02392 286 935

Sheffield Jayne McDermott 0114 2713 086

Brompton Lucy Pigram 0207 352 8121

Dundee Steve McSwiggan 01382 383 233(Available Mon, Tues & Weds am)

Bedfordshire Rita Boulton 01767 312 544 Burton on Trent Helen Nutland 01283 566 333 ext 5247 Bristol & Bath Margaret Goff 01454 310 225 (Members only please)S. Cumbria/N. Lancs Ruth Randall 01524 904 493 [email protected] Anglia Jacky Marsh 01394 286 637Eastleigh Kathy Allen 02380 610 678Fife Rose Bevan 01382 552 272Lincolnshire Elenid Matthews 07854 219 961London Ruta Rackaityte 07702 245 068 [email protected], NW Marilyn York 01923 286 780Manchester Gill Holden 01942 877 259Merseyside Helen Lingwood 0151 280 1194 [email protected] East Jessie Pickering 01388 527 840North Yorks Tony Overend 01423 862 551N. Ireland Patience Bradley 02890 592 370 [email protected] & S Hampshire Alison Wright 02392 367 960 Southport Nikki Whitehill 01704 550 580 [email protected] Fay Collings 01737 762 005Worcestershire Shirley Lynch 01386 553 392 [email protected]

MEMBER SUPPORT CONTACTS


Michala (pictured) had a portacath for iloprost infusions. When she was deciding whether to have oneand was doing some research into what it was like to have a portacath, she felt a little lost. She foundthat the only sites or blogs were from an American point of view, or by people who have cancer, andwere not very positive about the experience. Michala has a blog and decided to write a piece abouther portacath “experience”, which has been adapted to fit the Hot News page.

Portacath Blog

12

Even after years with extreme Raynaud’s (once called a ‘disease’,then a ‘syndrome’ and now more commonly called a‘phenomenon’), my decision to have a portacath implanted in mychest wasn’t taken lightly.

Although I do not consider myself ‘ill’, I’ve endured years ofinfusions, needles and PIC lines – giving me a window into theworld of chronic illness. I do, however, suffer from a very seriouscase of a relatively common condition – Raynaud’s. It’s effects onme are various and vicious. Even if I’m feeling warm and toasty,the blood flow to my hands and feet will suddenly shut down - asif I was plunged into icy temperatures although the reality is that itcan happen when there is only a minor change in the temperatureor if I’m in a slight draft! Due to Raynaud’s I’ve had ulcers, andchilblains, but I feel lucky to have avoided other horriblesymptoms. All round, I found the experience horribly debilitatingbefore I started having infusions of Iloprost medication.

For me, Iloprost is the ‘extreme treatment’. Administered inhospital, medication is pumped through your veins over three tofive days and has the effect of opening up all those little bloodvessels, so in my case it helps prevent the ‘shutting down’ of myhands and feet. There is a big BUT coming…the problem is that Ineed three or four infusions a year and my veins are now rather‘shot’ after all they have been through. Catheters used in venouscannulation (often called ‘Venflons’ after the flexible polymer theyare manufactured from) will no longer go in easily. A peripherallyinserted central catheter (PICC or PIC line) is a thin, soft, flexibletube – an intravenous (IV) line commonly used successfully forsuch infusions. The PIC line runs from your arm, inside your veinand into your chest cavity and, in my case, they were gettingincreasingly difficult to insert. Eventually, for me, insertion had tobe done under local anaesthetic down in the X-ray department –all in all a most uncomfortable, difficult and frustrating experience.The future felt bleak - my delicate veins were traumatised anddamaged. Yet I was facing the prospect of Iloprost infusionsregularly for the rest of my life. That could be over 250 infusions,which meant 250 PIC lines…

The prospect was daunting to say the least but when the doctorsuggested using a ‘Chest Port’ I wasn’t impressed. For a start,they aren’t considered the most attractive things on the planet!‘Google’ it and you will see the type of images I had in my head.I’m only 25, I’m not married. My thoughts were (vain as it may be)that I’d have the thing in my chest when I got married…so I put itout of my head. Then I had the next PIC line that took nearly anhour to get in and the doctor again reminded me that a chest port(portacath) was the logical next step.

A portacath is a ‘central venous access device’ – it isn’t a short-term fix and the port can stay in place for up to a decade. Untilresearch develops a better way of managing my severeRaynaud’s, Iloprost is the one for me…and many other patients.So, I told my consultant I was serious about getting the port. His

first response was “They aren’t pretty” but thankfully I’d alreadyspoken with the doctor who was going to implant my port, whohad offered a solution: “We hide it” he said!

I admit I was very anxious making my way to the X-ray department– fearing the ‘assault’ of the procedure. There followed whatseemed like 20 or more injections of local anaesthetic but nosedation. Although this meant I felt no pain, I could still senseevery tug, push and prod. I had sensations in my throat and of the‘tunnel-making’ instrument making room under the skin for thetube to sit in which wasn’t pleasant at the time.

The doctor undertaking the procedure was fantastic – all the stafftried to put me at ease and it was successful. However, I feltvulnerable, hurt and violated afterwards. I was lucky to have thesupport of wonderful friends who were there pre- and post- theprocedure and took care of me until I was allowed home. Once Iwas in the relative privacy of my boyfriend’s car, I’m not ashamedto say I was completely overwhelmed, sore and felt veryvulnerable …and I just sobbed.

The next 4 days were painful for me and I felt very groggy. Iunderstand that each person’s experience is different – one friendhad said for her it looked worse than it felt but for me that was notthe case. Physically, I suffered minimal bruising and swellingalthough my collarbone felt very painful. I knew it would heal andafter a week I started to feel like myself again.

It is still early days, but the stitches are out and it's healingbrilliantly! I can sleep on it, and I only feel it when I make a stretchfor something. It isn’t invisible but as it is hidden under my arm, allyou see is a vein-like ‘thing’ going up my chest and over mycollarbone. The outlook is positive now I’ve had my port fitted andthe operation is behind me.

So, if you're reading this after being told you need a port, here area few words of wisdom from my personal experience:

1. Enjoy a long hot shower or bath as close to the time of yoursurgery as possible - your next one will be after those stitchesare taken out.

2. Stock up on baby wipes to keep you fresh and clean in themeantime.

3. Avoid using a vacuum cleaner - even with the opposite hand- a clean carpet just isn’t worth the pain and I'm going to milkthat one for as long as I can!

What is it? A port (or portacath) is a small medical appliance thatis installed beneath the skin. A catheter connects the port to avein. Under the skin, the port has a septum through which drugscan be injected and blood samples can be drawn many times,usually with less discomfort for the patient than a more typical"needle stick".

If you wish to see the original blog, with pictures, you can do so here:http://outonalankylimb.blogspot.co.uk/2013/11/pedro-port.html


Inspiration

13

Alex Spark was diagnosed with generalised atrophic morphea scleroderma when she was 13.She is now 21 and in her final year of her degree in Animation and Illustration, and hopes tobecome a teacher when she graduates.

She has drawn this picture, demonstrating what scleroderma means to her, and this is what herthoughts on it are:

“I'm sure there are a lot of negatives with this disease but I am a positive person and I am sure anegative outlook on an image isn't going to capture people's attention.

I grabbed the colour off the Association's website so the pearl and her swimsuit are the RSA’scolour. Scleroderma to me has made me a better person. It has taught me to fight and keep goingno matter how rough things get, you will always pull through. It has taught me to appreciate lifeand how short it is, how uncertain things can be. I look at the world and focus on the beauty andpositive things life brings, because hope is the only emotion stronger than fear.

My illustration shows this, that no matter where you are there is always hope. I linked the colour ofthe pearl to the woman's dress to show that your association gives people hope.”

What insightful words from a very brave young woman. Thank you Alex for these and yourwonderful picture.

Helen Mason wrote this poem in 2013called Antibodies Shmantibodies.

She explains:

“I wrote this last year to explain why I had not been on a regular writing site.

I hope you enjoy it.”

I have a wonderful head of hairHealthy; Full of shine

The only bloody problemIs it’s shedding on the chair

I’m losing all my feelingExcept for where it hurts

My skin is changing colourAnd headaches leave me reeling

Stomach cramps, blurry visionPermanently tired

Too hot, too cold; Acid refluxImmunities in collision

My antibodies hate meThey’ve amassed and gone to war

Set themselves to self destructAnd keep coming back for more

I’ve been prodded, I’ve been pokedI’ve been declared an oddityI’m still young Missy Helen

Though parts of me are broked

Thank you Helen

If you would like to share your personalstory, art, poem or creative talents in the next edition of Hot News, please

get in touch. THANK YOU!

Now we areapproaching spring

you might want to get outside for

some exercise but might bewondering how this could

affect your Raynaud's.Obviously exercise is a greatthing for your health and can

boost circulation which can helpRaynaud's. However, if you

exercise intensely, then blood isdrawn to the core area, andaway from the extremities

which could trigger aRaynaud's attack. Justmake sure you know

your limits.

When caring for an ulcer, trytaking a daily multivitamin and

increase the protein in your diet to aidrecovery

Stress releasesadrenaline, which further

narrows blood vessels. So ifyou suffer from Raynaud’s, try

and avoid stressfulsituations!

Turn your tightsinside out before puttingthem on. This means theseam won’t rub your toeswhich some have foundeases their Raynaud’s.

Have you signed up to our Facebook and twitter pages to hear all thatis going on? We share hints, tips, stories, articles, anything that youmight like to read! You can follow us here:

www.facebook.com/raynaudsandsclerodermaassociation

@raynaudsuk

Got a hint ortip? Please let usknow and we can

share it to helpothers!


Did you know?

14

Weekly Serving of Oily Fish 'may halve Rheumatoid Arthritis Risk'

Women who eat oily fish every week may benefit from a significant reduction in their risk of developing rheumatoidarthritis, scientists have found.

A research team at Sweden's Karolinska Institute analysed the dietary habits of 32,000 women, all of whom were bornbetween 1914 and 1948 and were followed from 2003 to 2010. Participants provided information on their diet, height,weight, parenthood status and educational achievements, as well as recording the frequency and amounts of variousfoods they ate, including several types of oily and lean fish.

A total of 205 women were diagnosed with rheumatoid arthritis during the follow-up period and the researchersdiscovered that a high dietary intake of omega-3 fatty acids - which are found in fish such as salmon and fresh tuna - wasassociated with a reduced risk of the autoimmune disease.

More than a quarter (27 per cent) of women who developed rheumatoid arthritis ate less than 0.21g of omega-3 fatty acidsper day. Those who ate more than 0.21g per day - approximately one serving of oily fish or four servings of lean fish perweek - at two separate time points, a decade apart, were half as likely to develop rheumatoid arthritis as those whoconsistently ate less than this.

The findings suggest that women need to eat at least one portion of oily fish every week for several years in order to gainthe most benefit. Writing in the Annals of the Rheumatic Diseases, the study authors claimed: "The inverse associationbetween fish consumption and [rheumatoid arthritis] can be attributed mainly to its content of long chain [omega-3 fattyacids]." The study also revealed that a high proportion of women who smoke cigarettes - a known risk factor forrheumatoid arthritis - eat insufficient amounts of oily fish.

Professor Alan Silman, medical director of Arthritis Research UK, welcomed the findings of the study, saying: "Fish bodyoil and fish liver oil are rich in omega-3 essential fatty acids, which can regulate the body's immune system and fight jointinflammation. We've known for some time that there is good evidence that in people with active arthritis, taking fish oilscan reduce the level of inflammation.

"What this study suggests is that by taking high levels of fish oils it would appear that it can prevent inflammation fromstarting in the joint. One of the challenges is that this can mean quite substantial changes in people's diets."

Thank you to our friends at Arthritis Research UK for sharing this article.

DLA Change of Number

The Department for Work and Pensions (DWP) is changing the Disability Living Allowance/Attendance Allowance (DLA/AA) Helpline telephone number. Thiswill improve access for claimants by providing a more simple approach tocontacting them.

From 29 January 2014 a new number for Attendance Allowance was introduced.Claimants can contact the Attendance Allowance Service Centre on either 0345 6056055 or 0845 605 6055. The new textphone number for Attendance Allowance will be0845 604 5312. This is open Monday to Friday 8am - 6pm.

The DLA/AA Helpline number (0845 712 34 56) will become a dedicated line for Disability Living Allowance only.

The introduction of both an 0345 and an 0845 number is to meet the Permanent Secretary’s commitment to allDWP helplines, running both numbers to enable claimants to make an informed choice in order to minimise theircall costs. The 0345 number will in general reduce the cost when dialled from a mobile phone, whilst the 0845 number will ensure those who benefit from low rates for these calls (generally when calling from landlines)are not disadvantaged.

Clinical Trials

If you are interested in finding out about clinical trials in the UK, the best place to look is clinicaltrials.gov

All trials are obliged to register on this website and is publically available. The site can be searched to see current orrecent trials that are registered in scleroderma and other relevant disorders.


Did you know?

15

We are proud to be associated with the followingcharities, amongst many others:

RSA's founder, Anne Mawdsley MBE, retired from the charity at the end of 2013 and established 'Raynaud's &Scleroderma Support', a service which aims to give patients, carers and health professionals the benefit of her

personal experience. She runs a website www.raynaudsandscleroderma.co.uk and is happy to receive emails [email protected] as well as calls to 07530 810 064. We know she would love to keep in

touch with friends she has made through the RSA over the years.

Have you considered including the RSA inyour Will?

The RSA receives no government funding, so legacies arehugely important to us. Without such memorablecommitment to our cause, we would not be able to fundand extend our vital research and welfare projects.

Did you know only 7% of the UK population include acharity in their Will? Making a Will is very straightforwardand not as costly as many people think. It is the only wayof ensuring your wishes are met after your death and yet 1in 5 people in the UK die without one. Many people assumethat you need to be wealthy in order to leave a legacy to acharity. This is not the case because however small or largethe amount, it will certainly have a positive impact.

If you are considering including the RSA in your Will, wecan supply information to help you. It is very easy toinclude a charity in your Will, but we recommend that youconsult a solicitor to ensure your intentions are clear. If youalready have a Will, changing it to include our charity isstraightforward, as your solicitor can easily draft anaddendum, called a Codicil, which is not expensive to do.

Your support could really make a difference to people with Raynaud’s & scleroderderma. For more information, download our Legacy leaflet fromwww.raynauds.org.uk/leaflets or contact head office.

Are you jetting off on holiday soon?The following travel insurance providers have

been recommended by members:

All Clear: 0845 250 5200Club Direct: 0800 083 2466

Freedom Travel: 01223 446914 Free Spirit: 0845 230 5000

Insurance Choice: 0844 5577 70 It’s So Easy: 0844 357 1315 Saga Travel: 0800 015 8055

Insure and Go: 0844 888 2795 Ext 2795 Post Office: 0800 169 9999 for those aged 18 to 64 or

0800 294 2292 for those over 65

The RSA does not accept any responsibility for therecommendations. It is advisable to shop around for

the best deal.

Have a lovely holiday!


PUBLISHED BY:RAYNAUD’S & SCLERODERMA ASSOCIATION

112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: [email protected] Website: www.raynauds.org.uk

Raynaud's & Scleroderma Association © Copyright 2014. All Rights Reserved.Charity Reg. No. 326306

Disclaimer: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember that

what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.

Chief ExecutiveElizabeth Bevins

FounderAnne Mawdsley MBE

PresidentProfessor Dame Carol Black DBE

Vice PresidentProfessor Chris Denton

TrusteesBarry Hicks

Joanna KaddishProfessor Jeremy Pearson

Professor David Scott

Executive Directors of RSATrading Co LtdGeoff BaggottTerry Warrener

PatronsSharron Davies MBE

Roger Jefcoate CBE DLVeronica, Lady Piercy

Nick RossDavid Wilkie MBE

Medical AdvisorsDr. M Anderson

Professor J BelchSister S Brown

Professor C DentonProfessor A L Herrick

Dr. C LovellDr. R Macdonald

Professor P MaddisonProfessor R Moots Professor A Silman Professor D Veale

Head Office112 Crewe Road, Alsager,

Cheshire ST7 2JA

Telephone: 01270 872776

Fax: 01270 883556

Email: [email protected]

Websites: www.raynauds.org.uk

www.scleroderma.org.uk

Shop: www.rsa-shop.co.uk

Charity Reg No. 326306VAT Reg No. 159099076

Working together with The Scleroderma Society

As you would have previously read, the Raynaud's & Scleroderma Association is pleased tobe working in partnership with the Scleroderma Society. We will be working together onvarious projects to increase knowledge, reduce overlap and also costs. Look out for jointlyproduced leaflets and other material in the future.

An excellent example of how this partnership will benefit the RSA is the physiotherapy leafletproduced by the Scleroderma Society. This is an incredibly informative leaflet and will greatly benefit those withscleroderma. It highlights how exercise makes you feel fitter, healthier and can lift your mood. It can also increase yourindependence and improve your social life, as well as help to improve function and your ability to cope with everydaytasks and situations.

The leaflet also discusses stretching and how this can help to loosen off any tightened tissues under the skin. Getting intoa routine of daily stretching will allow you to minimalise the effects of scleroderma on your movements. Many patientsalso say that they find their stretching helped to relieve pain.

The leaflet lists some stretches that can help you and are also illustrated to make them clear. We haveincluded one below. It is a wonderful leaflet and we are so grateful that our working partnership withthe Scleroderma Society means we can share information like this and be able to help our supporters.

The leaflet can be downloaded from our website at www.raynauds.org.uk/publications/leaflets or if youwould like a copy please send a SAE to head office.

Neck side flexions: tilt the head so that the ear gets nearer to shoulder, and be sure not to be looking backwards forthis stretch. You should feel a firm but comfortable stretch at the opposite side of the neck, running down towards theshoulder

We would appreciate your feedback on Hot News. What did and didn’t you enjoy in this issue? What would you like to see more of and less of? Please let us know at Head Office by phoning 01270 872 776

or emailing [email protected]. Thank you.


Hot news 2014 Vol 1

Documents

world scleroderma day

scleroderma societyand

raynauds attackworking

hot news hot news

rsa team

new members

thescleroderma society

edition of hot news