hot news issue 121

In this issue...

Issue No. 121 Volume 3 2012

Pedalo Challenge Raises over £23,500

Raynaud’s - Hints & TipsLouise Parker

Page 3

Well we did it but the weatherwas not in our favour!However, before I give anaccount of the challenge Ijust want to say a huge thankyou to everyone whosupported me. I really meanfrom the bottom of my heart,that without such wonderfulsupport and enthusiasmfrom everyone, includingmany health professionals, Idoubt I would have made it. Thank you all so much. See pages 10 & 11 for fullreport.

Calcinosis ProjectProf Richard Winpenny

Page 8

Calcinosis ProjectA new grant has been awarded to Prof.Richard Winpenny at the University ofManchester to research further intocalcinosis. Patients with scleroderma candevelop calcium-containing lumps withinand beneath the skin. These lumps, whichare called ‘calcinosis’, often ulceratethrough the skin surface and can becomeinfected. They can be very painful and disabling.They develop especially over pressurepoints, for example in the fingers (wherethey can have a major impact on handfunction), and over the elbow and knee.Calcinotic deposits in patients withscleroderma are common, occurring inaround 20 - 40% of patients with the limitedform of scleroderma.

NailfoldCapillaroscopy

Nailfold capillaroscopy is an imagingtechnique of interest in both clinical andresearch environments. It allows directvisualisation of the capillaries (the verysmall blood vessels) of the nailbed. Theseblood vessels are usually abnormal inpeople with scleroderma (systemicsclerosis). The Raynaud's & Scleroderma Associationis funding a research study for 2.5 years atSalford Royal and the University ofManchester, which started in May 2011.This study aims to assess twocapillaroscopic imaging techniques: high-magnification videocapillaroscopy, andlow-magnification dermoscopy.

Annual ConferenceOur 30th Anniversary Conference will be held on Saturday 22nd September at the MercureHotel in Chester. There are still a few places available if you haven’t already booked.Joining us to give their expertise on the latest research and treatments are Professor DameCarol Black, Professor Chris Denton, Dr Marina Anderson, Dr Maya Buch, Dr John Pauling,Professor Ariane Herrick, Professor Jaap Van Laar, Sister Sue Brown and Louise Parker,Lead Nurse - Connective Tissue Disease. Our member speaker this year is Hannah Gray. We are hoping to have a really special conference this year to celebrate 30 years. Do joinus if you can.

Cool Million Appeal reaches £676,000

Clinical TrialsDr Voon Ong

Page 6

Celebrating 30 years 1982 - 2012

30th Anniversary Edition

Message of support from Sir Steve Redgrave

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These articles are continued on page 8

New TrusteeProf David Scott

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54167 RSA Hot News vol 3 2012v8_Vol1-09.qxd 13/08/2012 16:36 Page 2

Disclaimer: The Association does notaccept responsibility for theinformation contained in thenewsletter, either medical orthe advertised products.Remember what suits oneperson does not necessarilysuit another. If in doubt consultyour doctor before trying anysuggested remedies.

Welcome

02

No Decision About MeWithout Me

Shared decision making is aprocess on which cliniciansand patients work together toselect tests, treatments,management or supportpackages, based on clinicalevidence and the patient’sinformed preferences.Patients are supported inorder to deliberate about thepossible benefits andconsequences of treatmentoptions. Poor quality decisions getmade when the patient isunaware of all the treatmentoptions and the cliniciandoesn’t know enough aboutthe patient’s personalcircumstances. We need toacknowledge that while theclinician has expertise indiagnosis, prognosis,treatment options andoutcome probabilities, onlythe patient knows about theirown circumstances, valuesand attitudes to risk. Gooddecision making brings bothsets of expertise together. Many of us have personalexperience of the NHS, eitherbecause we have had to useits services or havesupported friends and familywith their care. Sclerodermais no exception. Whether theNHS has helped you or not,we need to make sure thatthe NHS works for us.Everyone who uses the NHSshould have the right to befully involved in all thedecisions made about theirhealthcare needs. From whattheir diagnosis and conditionmeans for them, having a sayin what treatment they wouldlike, to how they want to

manage their condition andwhat their preferred endresult would be. Decisionsmade about our healthcareneed to be made with us. Weshould be able to tell the GP,nurse etc. what we feel isright for us.I am on the Patient & CarerNetwork and the JointRheumatology Committee atthe Royal College ofPhysicians in London, whoare very much involved in theprocess of shared decisionmaking. I will report back in afuture issue of Hot News onany further information whichbecomes available on thistopic.

DLA Help Please

Do any members have anyexperience with filling in DLAforms and dealing withappeals? If so and you thinkyou may be able to helpothers, please get in touch.

Membership and HandyCards

We now have some veryattractive membership cardsto replace the old ones. Theyare similar to a credit cardand can easily be stored in your purse, wallet etc. If anyone would like areplacement card, pleasesend an SAE with yourrequest stating ‘NewMembership card’. In addition our new posters are designed to createawareness. We also havenew Handy Cards for bothRaynaud’s and sclerodermafor handing out to people,explaining about theconditions. Please help todistribute if you can. (Seepage 12)

Would you like to chat?

We are here for you. If youhave a problem or areconcerned about yourcondition or not sure what to do about hospitalappointments, referrals etc.do give us a call. I regularly talk to members,many of whom have similarproblems to myself, and Ithink it helps us both knowingthat somebody understands. Ihave to say that the mosttalked about subject isbowels! At last people arehappy to talk openly aboutthis embarrassing subject.

Practical Help

The RSA is happy to helpmembers on an individualbasis should you have aspecific need e.g. a piece ofequipment to help you in thehome, which is not availablethrough the NHS or your localcouncil. If you feel we couldhelp then do ring to discuss.

My New Friend!

I have bought myself a foldingmotorised scooter, which Ihave named Hetty my Helper!I am afraid that pride has goneout of the window and I nowhave the freedom to getaround. I am still nervouscrossing the road as my topspeed is 4mph. Will let youknow how I get on!.

With warmestwishes

Anne

Anne H Mawdsley MBE

Dear Readers,Our 30th Anniversary Cool Million project has kept us allbusy - my thanks to everyone for their support. We stillhave a long way to go but with your help we can make it.I hope you managed to enjoy the very few warm days wehad this summer.

Chief ExecutiveAnne H Mawdsley MBE

PresidentProf. Dame Carol Black DBE

TrusteesBarry Hicks

Joanna KaddishBeverley Myers

Professor Jeremy PearsonProfessor David Scott

PatronsSharron Davies MBERoger Jefcoate CBE

Veronica, Lady PiercyNick Ross

David Wilkie MBE

Medical AdvisorsDr. M Anderson

Prof. J Belch Sister S Brown Prof. C Denton

Prof. A L Herrick Dr. C Lovell

Dr. R Macdonald Prof. P Maddison

Prof. R Moots Prof. D Scott

Prof. A SilmanDr. D Veale

Head Office:112 Crewe Road, Alsager

Cheshire ST7 2JA

Telephone: 01270 872776

Fax: 01270 883556

Email: [email protected] www.raynauds.org.uk

Charity Reg. No. 326306

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Raynaud’s phenomenon is an episodiccirculatory condition, whichpredominantly affects women in itsprimary form, but affects almost allpatients who have scleroderma. It isusually associated with triphasic colourchanges (usually but not always: white,blue then red) numbness, pain andtingling. Hands and feet are the mostcommonly affected areas but somepatients also suffer with cold ears, nose,lips and nipples.For many sufferers Raynaud’s is anuisance and can be managed well by acombination of practical approaches,complementary therapies andmedication. For a smaller number ofpatients the combination of Raynaud’sand Scleroderma can have a hugeimpact on their quality of life due topersistently poor circulation, ulcerationand occasionally the loss of fingertipsdue to gangrene. Familiar storiesrelayed to me in my clinic are - howturning keys in locks is virtuallyimpossible, going food shopping(especially in the frozen food aisle!) ismiserable and getting to the till is evenworse due to fumbling with purses,cards and change.

Finally, the increasing prevalence of airconditioning can turn a fun shopping tripor a family meal into a test of endurance.Everyone has their own way of copingwith Raynaud’s but I will outline somesuggestions here that may be of somehelp. My patients have told me of somebrilliant coping strategies they often usetoo - I have included some of thembelow.

Practical Approaches

Prevention is key – Patients tell me oncethey are cold they take a long time towarm up again so always be preparedand leave plenty of time to get ready.Layering clothes is better than one bigjumper or coat. Thermals, vests, longsleeve t-shirts with a jumper andinsulated/windproof coat, hat, scarf andgloves are all necessary to fight the cold.Thermal or insulated boots are useful

too. They need to be comfortable, welllined and patients often buy a size or halfsize bigger to accommodate thickthermal socks too.Hand warmers to sit in your gloves orone in each coat pocket can be helpfulespecially if you are going out for a fewhours. Silk thermal liners fromoutdoor/camping shops are useful to putunder your normal gloves as an extralayer of insulation without adding bulk.Putting your clothes on the radiator towarm up before putting them on orgiving your socks and gloves a blast witha hairdryer can help too.If you can start the car a few minutesbefore going out to put the heater on thiswill help to warm the car up. These are more of a challenge but worthremembering - as far as possible, keepthe temperature around you constantand bear in mind that stress and emotioncan also trigger attacks.

Complementary therapies

Some evidence has implied that certainvitamins and supplements can help withcirculation.These are Gamolenic Acid (GLA) – this isavailable in its own form from health foodshops or it is also present in high dosesof Evening Primrose oil and Starfloweroil capsules. In any case, check theingredient label on which one you wantto buy and check how much GLA is ineach capsule. The recommended doseis around 320mg per day. You may needto add this up and often means taking 2-3 capsules a day to get therecommended dose. You can also getMaxepa (5 caps twice a day) or Omacor(4 caps a day) from your GP onprescription. These doses will ensureyou also get the therapeutic dose.Ginkgo Biloba and ginger supplementsare also widely available and can beuseful. Some patients have found acombination of any of the above canalso work well.

Medication

The most commonly prescribedmedications from our unit are listedbelow, this is not an exhaustive list andmany patients take other tablets, whichwork well for them.

Losartan 25-100mgonce a dayDiltiazem 60mgthree times a dayFluoxetine 20-40mgonce a dayIn severe cases, anIloprost infusion maybe necessary. This isa potent vasodilator,which opens up theblood vessels allowing the blood tocirculate to the peripheral areas moreeasily.Louise Parker – Lead Nurse,Connective Tissue Disease, RoyalFree London NHS Foundation Trust

Raynaud’s phenomenon – Hints & Tips

Last but not least, smoking makesRaynaud’s symptoms much worse

Not being able to hold a cold glasson a summer’s day and a freezingsteering wheel in winter makes life

just that bit more challenging on a day-to-day basis.

Louise Parker

NURSE ADVICE LINES

Sally Reddecliffe & Adele GallimoreRoyal Free 020 7472 6354(For Pulmonary Hypertension Enquiries)

Specialist NursesRoyal Free 020 7830 2326Sue BrownBath 01225 428 823Liz WraggManchester 0161 206 0192Specialist Nurse Leeds 0113 3923 035Jan LambLiverpool 0151 529 3034Karen WalkerNewcastle upon Tyne 0191 223 1503Audrey HamiltonBelfast 02890 561 310Paula White & Julie IngallPortsmouth 02392 286 935Jayne McDermottSheffield 0114 2711 627Lucy PigramBrompton 077588 943 175(For Lung Enquiries)

Steve McSwigganDundee 01382 633 957(Only available Mon, Tues & Wed mornings)

The nurse advice lines are not areplacement for care by your GP but veryoften it helps to talk to a nurse who can listenand offer advice. The nurses who run theadvice lines also have very busy schedulesand therefore on occasions you will get ananswerphone to leave your details for thenurse to get back to you.


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Doc Spot

I have a 3 year old granddaughter whohas been diagnosed with Raynaud’s.How common is this? Our localpaediatrician is planning a drugs trialwith my granddaughter and I am worriedabout it. Are there any medications thatcan be taken by young children withRaynaud’s?

Raynaud’s can occur at any age, butonset under 5 years old is veryuncommon. Treatments could includevitamin and other nutritionalsupplements that have been helpful inadult cases. Prescription drugs areusually avoided in this age group, partlybecause it is difficult to assess theseverity of symptoms or documentbenefit at such a young age. Any drugtrial involving children needs very carefulethical review and your localpaediatrician should be able to discussthis with you.

I was diagnosed with Raynaud’s when Iwas 20 and now have a 15 month old sonwho always has cold hands and feet. Mydoctor says he is too young to haveRaynaud’s – is this true?

Although Raynaud’s has been reportedin very young infants, it is uncommon. Allsmall children tend to have coldextremities in low temperature becauseit helps the body to conserve heat andthis is especially important in children.Raynaud’s can occur in more than onemember of the family but is generallyprimary Raynaud’s without any moreserious disease association.

I feel like I’ve tried everything available tohelp my Raynaud’s and now I’mconsidering trying biofeedback. Is thereany evidence of this working and is itworth trying to find someone whospecialises in it?

There have been some trials ofbiofeedback for Raynaud’s symptoms

but this is not a generally available oraccepted treatment approach. Moreresearch is needed to establish if it ishelpful and whether it might be useful inprimary or secondary Raynaud’ssufferers. Biofeedback is essentially away of educating the involuntarynervous system to increase blood flow tothe extremities. It is likely that onlycertain cases might respond dependingupon the underlying type of Raynaud’s.

I have been given the opportunity to haveIloprost to help with my painfulRaynaud’s but I am concerned about theside effects. Do the side effects last justwhile the drug is being administered, orwill I keep getting headaches/facialflushing even after the 5 day infusionperiod?

Iloprost is a drug that can helpRaynaud’s by improving blood supply tothe extremities and may improvecomplications such as digital ulcers. It isa form of prostacyclin, a naturalsubstance produced by the bloodvessels that may be deficient inRaynaud’s. It causes side effects suchas flushing when it is being administeredbut these disappear almost immediatelywhen the treatment is stopped althoughthe benefit of treatment often remains forseveral weeks.

I have primary Raynaud's and my bloodtest showed that I have negative ANA.Can this change with time or doesnegative ANA mean I will always havePrimary Raynaud's?

Primary Raynaud’s means thatsymptoms of blood vessel spasm in theextremities, triggered by cold oremotional stress, are not associated withany other medical condition. It is much more common than secondaryRaynaud’s associated with anunderlying disease such as

scleroderma. By definition patients musthave negative antinuclear antibodies(ANA) on blood testing and normalnailfold capillaries by capillaroscopy. Ingeneral these tests do not change,especially if they have been tested twiceat an interval of more than 12 months,but if there are any clinical concernssuch as development of other symptomsor complications such as digital ulcers,then the tests should be repeated.

I have just been diagnosed with thermalurticaria, which I am told can be relatedto Raynaud’s. Can you tell me moreabout this?

Urticaria is an itchy rash that developswhen histamine and other factors arereleased from blood cells in the skin. Itcan be triggered by allergies or insectbites. Sometimes Raynaud’s canprecipitate the rash perhaps due to thecooling of the skin associated with anattack.

I was diagnosed with primary Raynaud’sabout 7 years ago and since then Ihaven’t noticed any evident degenerationof the symptoms. Raynaud’s is affectingboth feet and hands on a daily basis. I’verecently had blood tests to investigatethe level of ANA, IgG, thyroid and liverfunction. The results reported a positive1:1600 ANA (centromere pattern) leveland high MCV and MCH. My GP said thisis normal in people with Raynaud’s but Iam a bit concerned that these could beindicators of secondary Raynaud’s. Theblood test results I had 7 years agoreported a negative ANA. Would youadvise further investigations, perhapsconsulting a rheumatologist, or is itenough to have regular blood tests?

The majority of cases of Raynaud’s arenot associated with any underlyingdisease (therefore primary Raynaud’s)and these are associated with normalnailfold capillaroscopy and negativeanti-nuclear antibody (ANA). Somepatients with Raynaud’s have a positiveANA and/or abnormal nailfold capillariesand these individuals may over timedevelop features of a connective tissuedisease. Sometimes such cases aretermed ‘autoimmune Raynaud’s’ todistinguish them from primary cases.

Your Questions AnsweredProfessor Chris Denton FRCPConsultant Rheumatologist, Royal Free Hospital

If


05

Doc SpotAround 1 in 10 progress if they arefollowed up but this may occur afterseveral years. Therefore it would beworthwhile seeing a specialist andperhaps having a capillaroscopyexamination and a clinical assessment.ACA is a particular pattern of ANA thatoccurs more often in the limited form ofsystemic sclerosis.

I have a white chalky patch of skin on thetip of my left forefinger, partly under mynail. My doctor said it was probably acalcium deposit connected with myRaynaud's. I have had Raynaud's since Iwas 6 and am now almost 72 and I havenever experienced this before. Could thisbe a symptom of scleroderma?

Raynaud’s does not directly lead to thisfeature, but some forms of sclerodermaare associated with the formation ofchalky deposits under the skin oraround the joints. These depositscontain calcium and are calledcalcinosis. They can lead to localdiscomfort of ulceration of the skin ormight sometimes become a focus forinfection. Sometimes local surgery isrecommended but there is no provenmedical therapy that reliably improvescalcinosis although some treatmentsmay benefit individual cases and this isan important area of research. An X-rayof the hands can be helpful and othertests can confirm whether sclerodermais responsible.

What is the best way to dress fingerulcers? I dress them myself and find itvery hard.

Dressings are important and you shouldtake advice from your family doctor orfrom a hospital clinic. The correctdressing depends on the location andtype of ulcer. Factors that areconsidered include the presence ofinfection, whether the ulcer is dry ordischarging and if it is over a movingsurface such as a joint or at a site proneto trauma.

I have Raynaud’s and am takingnifedipine. I have recently started havingswallowing and digestive problems andmy rheumatologist has diagnosed mewith scleroderma. However, I have readthat nifedipine can cause swallowingdifficulties, so could this be the causerather than scleroderma? I’m not indenial about having scleroderma but I

just want to be sure the swallowingproblems aren’t caused by somethingelse.

Scleroderma can lead to Raynaud’s andswallowing difficulties, usually due toaltered ability of the muscle in theoesophagus to move correctly. Drugslike nifedipine can help Raynaud’s byreducing the tendency for vessels to gointo spasm during an attack. However,this can sometimes aggravateswallowing difficulty by also reducingoesophageal movement. Overall thoughin most patients the benefit forRaynaud’s outweighs any swallowingeffects that can often be effectivelytreated by other drugs.

Is there any treatment for lung fibrosis?

Lung fibrosis is common inscleroderma, occurring in around a thirdof patients, but may be mild or severe.Mild fibrosis may not require majortreatment unless it is worsening butmore extensive cases can be treatedwith drugs that suppress the immunesystem, such as cyclophosphamide.Clinical trials have confirmed the benefitof this treatment in more severe casesbut as with any potent drug there maybe side effects. There are othertreatments that are used in lung fibrosisand new drugs are currently beingtested so that in the future there arelikely to be additional treatments.

I have had horrendous reflux andvomiting during the night. The reflux disturbs my sleep and I wakecoughing and choking on vomit. Agastroenterologist is arranging an urgentscope for me. I have tried sleeping onseveral pillows, but because Iexperience muscular skeletal pains, I am very uncomfortable. I also have iron deficiency anaemia and mygastroenterologist is arranging ironinfusions for me. Can you suggestanything that might help me?

Scleroderma and other connectivetissue diseases are often associatedwith swallowing problems and reflux ofstomach acid or food into the throatcausing heartburn and vomiting. Thisoccurs due to reduced strength in themuscles of the oesophagus (gullet) that usually control swallowing.Sometimes food can become stuck inthe oesophagus or inflammation(oesophagitis) may cause scarring ornarrowing (a stricture) that can be

treated at time of gastroscopy. It isimportant for you to have a gastroscopyto assess this and also check whetherthere is any cause for bleeding in thestomach that might explain a low ironlevel and anaemia.

How is diet relevant to scleroderma? Canit make a difference?

Diet is relevant to scleroderma in severalways. First, it is common to lose weightin scleroderma and so maintaining anutritious diet is important. Small mealsthat are easy to swallow and have highenergy content are usuallyrecommended. Since vitamins andnutrients may help to relieve symptomsof Raynaud’s, having a good diet isimportant and this may besupplemented by vitamin preparations.Finally, sometimes the bowel symptomsof scleroderma are worsened orimproved by certain foods. Somepatients observe improvement whenreducing wheat containing foodstuffs orby adjusting dairy products or lactoserich foods but these effects are notuniversal.

I have had many tests for my gastroproblem which was diagnosed asbacterial overgrowth. I have lost weightand wondered if there is anything I cantry? I have tried Probiotic drinks but theydidn’t help. I also have a dry mouth.

The intestinal system is almost alwaysaffected in scleroderma. Dryness of themouth can be very troublesome andresults from inflammation and fibrosis ofthe salivary glands. Slow contraction ofthe muscle in the bowel wall can lead tostagnation of the bowel and overgrowth ofbacteria ading to bloating, diarrhoea andpoor nutrition. This leads to a conditioncalled ‘small intestinal bacterialovergrowth’. Antibiotics given by mouthcan be very helpful in treating this and thisis the main treatment that is used.Courses of antibiotics are often given inrotation to avoid bacteria becomingresistant. Probiotics modify bacterialtypes that live in the bowel by introducing"good" bacteria. Unfortunately this maynot be so good in scleroderma and soalthough some patients report benefit,others do not. Therefore if you try them itshould be for a short time at first to assessbenefit. Probiotics cannot be combinedwith antibiotics as the two may canceleach other out.

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If you have a question you would like Professor Chris Denton to answer, please send to Head Office


The practice of medicine is oftenthought of as much an art as ascience. Even in scleroderma,potions of warm milk andprocedures such as bleeding,whose value was at best dubious,were in common usage in ancienttimes when science was absent inthe art of healing. Thankfully,medical research in sclerodermahas laid the foundations for theadvances made in the care of ourpatients over the last fewdecades.

Clinical trials form the platform that links medical research withclinical practice in scleroderma. The trials examine how a newtreatment works in a clinical setting. It is absolutely critical thatfor a drug to be approved for use in clinical practice, it must beshown to be effective in clinical trials. For example, Bosentanwas tested in many patients with scleroderma in several majorclinical trials before it was finally approved for treatment ofpulmonary hypertension (a complication of scleroderma withincreased blood pressure in the small arteries in the lungs) andulcers affecting the fingers (digital ulcers). The success ofthese trials with Bosentan has clearly transformed the lives ofmany patients with scleroderma. This is particularly importantin an uncommon condition such as scleroderma where thereis a great need for better treatments.

Participants in clinical trials can therefore play a more activerole in their own health care, gain early access to new researchtreatments before they are widely available, and help others bycontributing to medical research. Patients will also receiveregular and close monitoring by the medical team conductingthe research. There are possible risks to clinical trials. Thesemay include unpleasant side effects of the treatment but thetrial procedure will ensure that these will be managed as soonas possible by the appropriate trial team who will look after you.

The trial may require more of your time and attention includingtrips to the centre conducting the trial, more treatments andsometimes more complex treatments.

All clinical trials are governed by regulatory bodies with clearguidelines about who can and cannot participate. Inclusionand exclusion criteria form the gateway of patients to clinicaltrials. Factors that permit patients to be selected for trials are

called inclusion criteria whereas factors that prevent patientsfrom entering trials are called exclusion criteria. The trialfollows a meticulously planned protocol that details whatresearchers and participating patients must do in the study.These rules are important to ensure suitable patients arechosen and to ensure safety for all.

These trials address a range of problems and complications inpeople with scleroderma. Some of these trials listed belowmay be familiar to you and indeed, you may be taking part inthem. Acronyms for the trials are also listed.

European Scleroderma Observational Study (ESOS)

This is an observational study across many European centresthat examines response of patients with early active diffusecutaneous scleroderma to the different immunosuppressantdrugs that are currently prescribed by doctors. Thesemedications include Mycophenolate mofetil, Methotrexate andCyclophosphamide. A dedicated website has been set up forthis trial: http://www.ssc-esos.net/home.asp

Digital Ulcers with mAcitentan (D U A L 2)

Hot on the heels of the success of Bosentan in prevention ofnew ulcers in people with scleroderma, this trial will examinethe effectiveness of a similar drug, Macitentan in prevention ofnew digital ulcers over a 16 week period. A major clinicalstudy, SERAPHIN recently reported that Macitentan was foundto be effective in patients with pulmonary hypertension and thetrial design for DUAL2 will use a similar dose pattern ofMacitentan in patients with digital ulcers.

CC-4047

This trial will examine the effectiveness of a new agent,Pomalidomide, a new compound in patients with diffuseScleroderma and lung fibrosis (inflammation and scarring ofthe lungs).

B-cell therapy (MEDI-551) in Scleroderma

This study examines the effect of B cell therapy called MEDI-551 with a novel compound in patients with scleroderma whoalso have some skin thickening in scleroderma.

Tocilizumab

This major study will examine the effectiveness and safety oftargeting a particular factor, Interleukin-6 in those with diffusescleroderma. Patients with fewer than 5 years of disease andactive progressive skin disease are particularly welcomed toparticipate in this trial. Tocilizumab is one of the new biologicalagents (antiTNF drug is also a biological agent) that has beensuccessfully used for patients with rheumatoid arthritis. Thereis some evidence to suggest that Interleukin-6 may beimportant in the scarring process (fibrosis) in scleroderma.

Continued on page 706

Clinical TrialsMaking sense of Clinical Trials in Scleroderma

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Other than the clinical benefits, the trials also seek toanswer some of the scientific questions that would

help us to understand scleroderma better.

New experimental treatments are not always betterthan, or even as good as, standard care. Even if anew treatment has benefits, it may not work for all.

There are several new and exciting clinical trialsunderway at major centres in the UK.


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Do you suffer from systemic sclerosis (SSc)? Would you like to help with medical research?

The purpose of the study is to learn how safe and effective Tocilizumab (TCZ) treatment is in patients with SSc.

The study will last for approximately 2 years with 20 visits to the clinic. You or someone you know may be suitable if you:

Are aged 18 or over Have had SSc for less than five years Currently have active disease

There is no cost to gain access to the research study and you will be cared for by doctors and nurses at Cannock Chase Hospital if you decide to take part.

Please call 01543 576449 for more information

Tocilizumab Study for Scleroderma at Cannock Hospital

Clinical Trials

Continued from page 6

Nailfold VideoCAPillaroscopy study or CAP

Using this new non-invasive tool videocapillaroscopy, this trialasks why some patients are more likely to develop digitalulcers than others. Risk factors that may predict formation ofthese ulcers are examined by comparing two groups ofpatients: the first group include patients with past history ofdigital ulcers or current ulcers, and the second group withpatients with no ulcers.

Pressure and Pain in Scleroderma an Evaluation of aSimple Intervention (PISCES)

This trial examines the effectiveness of a shoe insole with heatretaining and cushioning properties in reducing foot pain andfoot pressure in patients with scleroderma.

Some clinical trials are set up to examine the way we diagnoseproblems or complications in patients with scleroderma and tounderstand the causes of the disease among these patients.

Early, Simple and Reliable Detection of Pulmonary ArterialHypertension (PAH) in Systemic Sclerosis (SSc)(DETECT).

This is an important study that examines the differentscreening tests to tell us who needs to have a right heartcatheter, (a technique that requires insertion of a guide tubeinto the blood vessels in the groin to the major heart vessels todiagnose pulmonary hypertension) and who does not. Thetrial has been completed and the first results will beannounced shortly.

Digital Ulcer Outcome (DUO) Registry

This is an observational study that collects clinical informationon patients with digital ulcers. This will help to chart out theprogress and outcome of these patients and response totreatments.

International, Prospective Registry For The DocumentationOf First-line And Maintenance Therapy In Patients WithPulmonary Hypertension (CompERA-XL)

Similar to DUO registry, this study aims to obtain long terminformation on the different drugs that are used for treatmentof patients with pulmonary hypertension in Scleroderma.

Myositis Study

Inflammation of muscles or myositis can affect a smallproportion of people with scleroderma. The aim of this study isto better understand what the cause of myositis is, bycollecting clinical information and performing genetics andantibody studies on a blood sample.

Further details about these trials should be discussed withyour doctors or the hospitals currently involved with thesestudies. The Raynaud’s & Scleroderma Association also workshard to bring together patients who are actively participating inthese trials. As scleroderma is an uncommon condition,collaboration among many centres with an interest inscleroderma across the world is critical. A websitewww.clinicaltrials.gov lists the majority of international trialsthat are ongoing in various centres.

Finally, attitudes and perception of clinical trials differ for eachpatient and the decision to take part in clinical trials is apersonal one.

It is important to consider all elements – ask yourself what youcan do to make scleroderma more treatable for you andperhaps what you would like others to do for you. It is hopedthat participation of patients in clinical trials will move us closerto finding better treatments for scleroderma and improve ourunderstanding of the biological processes underlying thiscondition.

Dr Voon Ong, Consultant Rheumatologist, Royal FreeLondon NHS Foundation Trust

Not all trials are drug-related

We will be holding a regional meeting in Cardiff on the evening of 8th October at which Dr Tom Lawson will be speaking. A booking form will be sent to local members but if anyone else is interested in attending please call or email for details.

Regional Meeting Cardiff

If participating, people should know as much aspossible about the clinical trial and feel at ease to askmembers of the health care team questions about it

and the care expected while in a trial.


08

Salford Study

Continued from front page...

Although several differenttreatments for calcinosis havebeen proposed, it is generallyaccepted that none are effective.While surgery can ‘debulk’ anarea of calcinosis (surgicallyremoving all or part of a lump), itis not without risk, especiallywhen performed in the handwhere the blood supply is oftenpoor in people with scleroderma.We need, therefore, to find amore effective treatment.

However, we first need to understand more about calcinosis

and, in particular, what calcinotic lumps actually consist of andif there is any way that these lumps can be dissolved. It issurprising that, until now, there has been little research intocalcinosis.

The work will be collaborative between the School ofChemistry and the Musculoskeletal Research Group, both atthe University of Manchester. Calcinotic samples will beobtained from patients attending Salford Royal Hospital (eitherdonated by patients after the lumps extrude through the skin,or at the time of surgery) and then transferred to the School ofChemistry. We are confident that the results obtained willsuggest possible new approaches to treatment.

The amount awarded to Prof Richard Winpenny, at theUniversity of Manchester, for this six-month grant is£27,313

Calcinosis Project

Continued from front page.Update on nailfold capillaroscopy research at Salford byDr Graham Dinsdale, Study Co-ordinator - July 2012High-magnification videocapillaroscopy gives very detailedimages and allows individual capillaries to be measured: thiscan be very useful in research. However, a special microscopeis required, and this is available only in certain centres. Incontrast, dermoscopy requires only a small hand-held piece ofequipment (called a dermatoscope) and is more widelyavailable.Questions which will be answered by the study include:

1. How many fingers should be routinely imaged in a clinicalsetting?

2. Can capillaroscopy be used as a reliable outcome measurein clinical trials of new treatments?

3. How do high-magnification videocapillaroscopy and lowmagnification dermoscopy compare?

The study involves recruiting 200 volunteers: 100 people withscleroderma, 50 people with primary Raynaud's phenomenonand 50 control volunteers. Volunteers have all 10 fingersimaged with both videocapillaroscopy and dermoscopy in astudy session lasting 1 hour. Some volunteers return for repeatimaging 1 week and 1 year after their initial visit. As of the end

of June 2012 we have recruited70 volunteers with the majority of1 week return visits completed. Intotal we have imaged over 1000fingers so far, collecting morethan 2000 images in the process!A group of capillaroscopy expertsbased in several Europeancountries (Belgium, Sweden,Italy, Holland and the UK) arecollaborating on this project withus in order to assess and scorethe collected images. Several UKcentres are involved: Liverpool,London, Newcastle, and Salford.Collected images will be sent to these collaborators and, usingcustom computer software, assessed on multiple, detailedfeatures including capillary size, shape and density. Eachimage will be assessed by at least four different scorers.Results will then be collected here in Manchester for furtheranalysis. This image scoring process is starting imminentlyand is expected to take approximately 12 months. We are verygrateful to the Raynaud’s & Scleroderma Association forfunding this study, and to everyone who is taking part.

Nailfold Capillaroscopy

Prof Richard Winpenny

Dr Graham Dinsdale

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Microscope system for high-magnification videocapillaroscopy.

Dermatoscope for low-magnification imaging (shown without attachable camera).


09

News

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My name is Hannah Gray and Ihave just spent a few weeks withAnne and the team at the officeas part of my dissertation. I haverecently completed my third yearat the University of Aberdeenstudying Social Anthropology,which is the study of humanculture and society. I hope to gointo Medical Anthropology whenI finish my degree. MedicalAnthropology looks at the socialand cultural factors thatinfluence how we experienceand deal with illness. To do this Ineeded to find a subject for my

dissertation and a group of people to spend time with. Itseemed sensible to start with a subject I know and ampassionate about – the Raynaud's & SclerodermaAssociation.I was diagnosed with Juvenile Systemic SclerosisScleroderma and Raynaud’s when I was eight and the RSAhas played a huge role in helping me and my family come toterms with, learn about and deal with my illness. For mydissertation I am investigating the importance of the charityto its members. I find it interesting that although I do not feeldefined by my illness, I do feel affinity with, and take comfortfrom speaking to fellow sufferers, despite everyone’sexperiences and circumstances being hugely varied. I am

interested in exploring how people experience andunderstand chronic illness as part of their lives throughtalking about their experiences with other sufferers, and howthe charity’s role differs from that of medical professionals.In order to gain an insight into the charity and what they do Iwas kindly allowed to spend some time at the office inAlsager. Luckily I had picked the week that Anne was doingher pedalo challenge so I stopped at Lake Windermere onthe drive down. It was a great day despite the cold weatherand I met lots of people there to support Anne. I can’timagine what it was like in the pedalo as I was cold in my fivelayers just watching! When I got down to the office everyonewas so friendly and helpful, answering all my odd questions

and permitting me to hover around getting to know all abouttheir jobs. I was amazed at the scope of work the charity getsinvolved in – from the personal member support of phonecalls, emails and letters, to meetings with pharmaceuticalcompanies to talk about products. It’s great to see what can be solved just by speaking tosomeone else who knows what you are going through.My dissertation isn’t due until March next year so I still havelots to learn and research to do. I hope to learn a lot more atthe conference in September – where I am also lookingforward to being this year’s member speaker!

Medical Anthropology - what does it mean?

What is the purpose of this study? Our study is exploring how exactly the various complexfactors encountered in scleroderma contribute to thedevelopment and impact of foot problems. To identify theimportant factors, the participants in the study undergo arange of clinical examinations including carefulmeasurements of the way the bones and joints of the footwork together, assessment of the blood supply andsensation to the feet, and assessment of the effect ofscleroderma on the skin. These results will be analysedusing a modern statistical technique called StructuralEquation Modelling which will enable to us work outprecisely which factors have the greatest effect on the day-to-day health of people with scleroderma. Progress so far The study started recruiting in February 2011 at therheumatology department in Chapel Allerton Hospital, TheLeeds Teaching Hospitals NHS Trust. By the end of thestudy we are aiming to recruit 150 people with sclerodermaand 50 participants without scleroderma or any other majordiseases (such as diabetes), who are 18 years old or over. We are on course to recruit the remaining 60 or so people

with scleroderma and 40 or so controls by the end ofFebruary 2013. As the study is still in the phase ofrecruitment we do not have any results yet. However, we

have been able to make some useful observations, such assome patients have problems with the blood supply to theirfeet and perceive different types of sensations. The studyhas already led to some promising avenues of futureresearch in the area of ulcerations of the fingers, calciumdeposits, and patient education. It has also given rise to thedevelopment of a local patient led support group. As thestudy continues we will keep you updated about progressand will pass on any interesting findings via Hot News.If you are interested in learning more about the study or anyresearch or clinical activities that we are developing in ourdepartment please do not hesitate to contact us, as we arehappy to help.Contact details:Begonya Alcacer-Pitarch, NIHR Doctoral Research FellowSection of Biomechanics and Physical MedicineLeeds Institute of Molecular Medicine, Division ofRheumatic and Musculoskeletal Disease and Leeds NIHRBiomedical Research Unit Telephone Begonya 0113 3924 964 or Richard W on 01133924939

“Multifactorial pathways contributing to the development andimpact of foot problems in scleroderma” - study update

Hannah GrayEveryone in the office seems to have a huge

knowledge of the illnesses and a real understanding of sufferers' problems.

So far recruitment has been promising, and 88participants have already been recruited.


10

Pedalo Challenge

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Fell Foot to Bowness on Lake WindermereWe travelled to the Lake District the day before the challengeand familiarised ourselves with the start and finish venues.Having been watching the weather forecast and winddirection for several days it looked as though we would haveto start at Bowness and finish at Fell Foot. However, wedecided to take the Lake Warden’s advice, as he thought thewind was going to change direction again to be southwesterly, which would have been ideal, but we had to make adecision the day before. Don Gilet travelled up from Londonand we met him at Windermere station. He is best known forhis roles in the BBC productions Babyfather, 55 DegreesNorth and EastEnders, where he played the part of LucasJohnson, the preacher turned murderer. He is currently doingplays on BBC radio. After a pleasant overnight stay at Newby Bridge, Monday, theday of reckoning arrived and I have to admit to feeling a littlenervous - would I be able to keep my legs going for theduration of the challenge? I was also worried about whetherDon would be OK as he had not had a chance to practise ina pedalo, only the indoor pedal exerciser, which I also usedregularly when the weather was too wet to practise outside.Several supporters were there to see us off from Fell FootNational Trust Park at 9.30am, on what was a miserable,black, cloudy day, with threatening clouds - but there was badnews. The wind had changed direction to a north easterly, sowe were going to be pedalling into the wind and against thecurrent. Fortunately there was only a slight drizzle butbecause of the waves caused by the wind and passing

steamers, each wave let water into the pedalo, so Don had tokeep bailing out using plastic bags and water bottles.Unfortunately the helium Union Jack balloons we had taken toidentify ourselves on the lake, just lay on the water due to thewind direction and were impeding our progress, so had to beremoved at one point.It was very cold and therefore difficult to keep warm. I had twoHeat Ease packs on my back, three thermal vests, three silverfibre tops, silver fibre socks, a woollen zipper, waterprooftrousers and jacket and then a life jacket! Wet feet didn’t helpbut I was determined to finish whatever the consequences. Iwanted to take photos from the boat, so had to keep takingmy gloves off which meant getting my finger bandages wet. It was comforting to have a support boat close by, driven bymy husband and Dr Mark Edwards, rheumatologist inSouthampton, who had very kindly volunteered to help outonboard in case of any emergency. Sue, my next-doorneighbour, was also onboard and was responsible forproviding us with food and drink along the way.I have to admit to this being the biggest challenge I have takenon to date and as I have promised everyone, it was my last.The training had not only been very time consuming but alsotough on the legs, especially as the weather leading up to thechallenge had not been good. I had been training indoors onthe pedal exerciser but mainly in the pedalo on water, doingapproximately 8 miles a week and more at weekends.

Continued on page 11

Anne and Don at the ready!

On the homeward stretch

The wind blew the helium balloons into the water

Don’s exhaustion shows!

Pedalling along against the wind

Mission accomplished


11

Pedalo Challenge

Continued from page 10Up to this point the furthest I had done in one stretch was 3miles so I knew that 5 miles was going to be tough. The traininghad to be done in tandem so my poor husband was also verymuch involved - needless to say he is delighted that it is nowover!Don was great especially as he hadn’t been in training as I had.He kept me entertained throughout and had music blaring outfrom his MP3 player, which helped to take our minds off what wewere doing. Unfortunately he got cramp with about a mile and ahalf to go but worked through it as he said he wasn’t going tolet a 70 year old woman beat him! At some stage I had to gritmy teeth and keep pedalling as I was also determined not to bebeaten. It was tough but a challenge is a challenge and therewas a lot of money at stake. The Lake Wardens told me thatnobody had attempted this before in a pedalo - now there’s asurprise!We were a tiny little speck on a huge lake. I had been told if weran into difficulties we were to contact the coast guard or theLake Warden and someone would be with us within 6 minutes.As it happened we were escorted from the halfway mark by twoswans that remained at the side of the pedalo. I am not sure ifthey had been sent to make sure we survived OK.

During the course I asked Don if he was enjoying it (a sillyquestion really!). He said ‘No’ but he enjoyed the reason he wasdoing it, in memory of his friend Roger Pemberton, an oldschool friend, who sadly passed away last year fromscleroderma.It took 6 hours to complete the course. The frustrating part wasseeing the finish but because of the strong wind we didn’t seemto be getting any nearer. We got there eventually and were givena wonderful welcome by supporters at Bowness. I feel satisfiedthat Don and I have made a substantial contribution towards theCool Million, as I know many of our members have also done ina variety of ways. There is still a long way to go so we mustcontinue to raise as much as possible by the end of the year.Finally, a big thank you to Don for giving up his time and energy- he even missed his train back to London which made it a verylong day for him. We both agreed that it took a while to recoverafter the event but it was well worth it. The good news is that to date the challenge has raised over£23,500 and donations are still coming in. If you haven’t alreadydone so and would like to contribute online, my justgiving site iswww.justgiving.com/rsapedalo.Again my most sincere thanks to everyone - why don’t theyhave pedalos at the Olympics? Now there’s a thought!

Thanks a Million - Cool!

The RSA was delighted to receive £500 in sponsorship for Anne’s pedalo challenge from Shell UKSocial Investment. The money was donated via the Shell Employee Action Programme and wasarranged by RSA member George Dickson, (pictured right), a former Shell employee. This schemeawards grants to current and retired members of staff or partners who regularly volunteer with aUK community group or charity. Grants are also awarded to individuals taking part in fundraisingactivities such as running a marathon for a nominated charity. The scheme awards 'top up' grantsof 10% of the money you raise up to a maximum of £350 for individuals and £500 for groups (threeor more staff).

Many companies offer similar ‘matched giving’ schemes which can often double the amount ofmoney raised by employees. If you think you might be able to support the RSA in this way pleaseget in touch. Very many thanks to George for supporting the RSA and for requesting the donationfrom Shell. Anne also very much appreciated your support at Lake Windermere.

Shell Former Employee Scheme

The RSA is registered with both JustGiving and Virgin MoneyGiving. The Virgin Money website is similar to JustGiving withfundraisers being able to set up a page on the website andcollect donations. The biggest difference between the twowebsites is that the management fees are less on VirginMoney Giving so we get more benefit. If you want to find uson this site type in RSA or Raynauds. You can donate on thefollowing website: http://uk.virginmoneygiving.com/giving/

Over the past few months our funds have been boosted byvery generous donations made in lieu of flowers in memory ofloved ones. At such a sad time we are most grateful torelatives and friends who have supported the RSA in this wayin the knowledge that their contribution towards research willhelp to improve the lives of sufferers of Raynaud’s andscleroderma in the future. All donations have contributedtowards the Cool Million Appeal to support research projects.

Virgin Money Giving In Memory

George Dickson

Publication costs for this issue of Hot News are supported by GSK.GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the

opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of GSK.


12

Fundraising

Many thanks to Alice Crowe and herdaughter Norma Thompson, who held afundraising night for Alice’s 80thbirthday party in May. £560 was raisedin memory of Alice’s daughter Marina.Pictured above at the party with Aliceare Marina’s three daughters Amanda,Alannah and Becky.

Manchester 10k

Well done toJohn Stanfield(left) and GavinWarnes, (right)both of whomcompleted the

Manchester 10k run in May. John raised£150 and Gavin raised £1,000 for theRSA. This was matched by his employerBUPA, who donated a further £1,000.Very many thanks and well done.

Open Garden Success

The photo shows the stall at which MargBacon and friends raised an amazing£1,030 by selling homemade productsat an Open Garden event in July.

Alsager Inner Wheel

80th Birthday party

Three Peaks Challenge

Karen Littley, President of the InnerWheel of Alsager presents Anne with acheque for £500. The majority of thismoney was raised by a sponsored statictandem. You will recognise Karen, asshe is responsible for running our onlineshop and membership database at theoffice.

DoHachemoful(pain anactsynpagunatcalbehafigonmigthedenoThne20su

Pictured above left to right, Ian Snowdon,Greg Lambert and Andy Smith. Theycompleted the very tough Three PeaksChallenge in June and raised £1,465 forthe RSA. This photo was taken on top ofSnowdon. Andy’s wife, Angela has bothRaynaud’s and scleroderma and is amember of the RSA.

Louise Shaw, who held a coffee morningin May and raised £112.

Shonagh MacKenzie ran the EdinburghHalf Marathon in May raising a fantastic£390. Elisabeth Brown’s ploughman’s lunch inher local village of Blandford Forumraised £140.Paisley Stow Brae Church held a jubileelunch and raised £200.Elenid Matthews organised a table topsale of crafts in June raising £150. Don Cunningham held anothersuccessful Pudding Club event andraised £150 in memory of his wife Judith,who was an RSA member. Brenda Holden once again persuadedher friends to take part in The WirralCoastal Walk for which they raised £267.The Cox family held a very successfulcake stall at their son Brennan’s schoolresulting in £400. Sylvia Cookson received donationstotalling £575 for the RSA in lieu ofbirthday presents. Sylvia also donated afurther £240, bringing the total to £815.Many thanks to all of Sylvia’s friends andfamily who supported the RSA.Drewena Brownlie’s daughter Claire andson-in-law Mark ran in the Aberdeen 10kand raised £620.Shirley and John Lynch would like tothank their local Mayor for inviting theWorcestershire RSA Group to a Coffeemorning at Pershore Town Hall in July,raising £235.Margaret McKenzie raised £235 from herPercy Box, Craft Day and a speakingengagement.

Bridgwater Young Farmers Club inSomerset raised £709 from a recentfundraising event.

Suzie & Robbie Palmer kindly donated£157 from their wedding in July.

Thanks to the following

Th20RogrjudFothearestra scli

With the help of members who havebeen sending their unwanted jewellery,Barbara Buchan has now raised almost£16,000. She has been holding stalls atlocal fayres where she sold items ofjewellery to raise funds for the RSA.Please keep sending your items toBarbara, but preferably not brokenpieces except for scrap gold and silver.If you would like an acknowledgement,please enclose your phone number sothat she can call you to say the packagehas arrived.Barbara Buchan, 6 Meadowlands,Woolpit, Bury St Edmunds, Suffolk IP309SE

Fundraising Champion

New Handy Cards

Please help to distribute these cards,leaflets and posters.


13

News

Do you have a dry mouth?Having always been encouraged tochew sugar-free gum for my terrible drymouth, I have finally found one that isn'tfull of all those artificial ingredients(particularly aspartame) you always findin chewing gum. It's called Peppersmithand it's made from real English mint so itactually tastes like mint, rather than asynthetic mint flavour and the chewypart is a tree sap - not a petro-chemicalgum base. As well as being 100%natural, it is sweetened with somethingcalled Xylitol, which I had never heard ofbefore. It comes from beech trees andhas quite extraordinary properties: itfights the bacteria in your mouth. So notonly does it stimulate any saliva youmight be able to make, it also reducesthe risk of tooth decay, and if yourdentist bills are anything like mine, that'sno bad thing. I hope it helps you too.This tip was taken from the BSSAnewsletter Vol 27 Issue 2 Summer2012. Have any members found othersugar free gum to be of help?

Did you know that it can help to drinkwater before having a blood test?By drinking water you hydrate yourbody, and it helps to increase the fluidlevel of your blood. This is because theplumper your veins are, the easier it willbe to find them. By being dehydrated itdecreases the amount of fluid in yourblood, and can cause you to havepoorer circulation. Another thing is tomake sure you are comfortably warm forthe test. Being too cold will restrictcirculation. This information was given by aphlebotomist.Best Christmas Present Ever!My husband bought me an electricblanket for Christmas which you put in achair and wrap around yourself - bliss!The warmth envelops your body, whichis really good when your Raynaud’s isbad. The blanket was from thesupermarket LIDL and the brand isSilvercrest - you can find them on theinternet. I can honestly say it haschanged my life with the warmth andcomfort it has brought me!Heather Cook

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We are delighted to announce thatProfessor David G I Scott has joined theBoard of Trustees.Prof Scott is an Honorary ConsultantRheumatologist and Honorary Professorat Norwich Medical School with alongstanding interest in connectivetissue diseases especially vasculitis. Hehas published over 250 articles,editorials and chapters mainly on thissubject. He has in the past beenPresident of the British Society forRheumatology and Patient InvolvementOfficer to the Royal College ofPhysicians (London), where heincreased his interest in patient issuesand gained some experience of politics.He continues to follow an activeacademic research programme.

On 29th June we celebrated World Scleroderma Dayby creating awareness amongst the medicalprofession. Our thanks to Professor Chris Denton forsupplying us with the following quote for the Press: “The importance of Scleroderma Day is to highlight thisrare and often poorly understood condition but also tooffer hope to sufferers. Better therapies are nowbecoming available and there is a great interestamongst health professionals and research scientists indeveloping new treatments. The Raynaud's &Scleroderma Association (UK) is funding research intoseveral areas which will ultimately provide better carefor patients and hopefully reduce the impact ofscleroderma on patients and their families.”

World Scleroderma Day

There have been some recent developments at the Royal Free Hospital. From April2012 the name has changed from the Royal Free Hampstead NHS Trust to theRoyal Free London NHS Foundation Trust. This siginifies that the hospital has beengranted Foundation Trust status which confirms that external assessors havejudged that it is performing well in terms of patient care and financial management.Foundation status opens up opportunities to further develop services. We hope thatthe successful scleroderma and associated Pulmonary Hypertension services thatare already nationally recognised will be able to develop further within this newstructure. One small example of service development is the recent establishment ofa specialist nurse led digital ulcer clinic, complementing the nurse led Raynaud'sclinic that has been very successful over recent years.

What's in a name?

Prof David Scott

Green Help

Turtle Doves are wrist warmers andfingerless gloves rolled into one. They’redesigned to be worn on the wrist all dayhelping to keep your wrists and handswarm. Made from recycled jumpers, theyare environmentally friendly and not onlydo they look and feel great but they arepractical too. Every pair of Turtle Doves isunique; they come in all the colours of therainbow... but they’re all green!

Prices range from £10 plus £2 p&p

For further details or to place an ordervisit: www.turtle-doves.com

or call 01743 344702.

Anne’s Tip - I wear a pair of Turtle Doveswrist warmers under my other mittens forextra warmth and they are not too bulky.

Prof Chris Denton


14

Contacts

BathOur support group has been going for13 years and at present has 11members of which 4 or 5 meet togethertwice a year (not in the winter months)at the Mineral Hospital in the centre ofBath. Unfortunately some of ourmembers are not well enough to attendthese days but I try to keep in touchwith them. Even if we cannot meet wecan still offer support to each other onthe phone or by e-mail. We are an older

group but that means we have a wealth of experiencebetween us on living with scleroderma and associatedconditions! New members of any age would be most welcometo join the group. Our next meeting will be at the RNHRD Bath(The Mineral Hospital) on Friday September 14th 2012 from2.30pm to 4pm. Please contact me if you would like to attend. Margaret Goff

ManchesterI am a member of a local support groupfor the RSA in the Astley area. We meetonce a month in a local pub for a mealand catch up. There are five membersof our group: Sue, Sarah, Sue, Ann andmyself and during the meet-ups weswap ideas, discuss the differentsymptoms of Raynaud’s andscleroderma and how we overcomethem in our day to day lives. We havefundraised for the RSA by organising

charity evenings with family, friends and colleagues to have agood time and raise money with raffles, door prizes andauctions. These fundraisers also help to educate peopleabout the conditions and how they affect the people whosuffer from them and how to spot the symptoms forthemselves. The most important thing for me about themeetings is talking to people who understand how I feel andlistening to them when they are having a bad time.Gill Holden

North WalesWhen I was diagnosed with scleroderma I had to retire fromnursing in March 2009. I was a Senior Sister in GeneralIntensive Care and was working at my local District GeneralHospital at Ysbyty Glan Clwyd in Rhyl, Denbighshire. I had asuccessful nursing career, not only working here, but also inCardiff, London and Bangor. When I was diagnosed I wantedto find out more and help others find out more, so I got intouch with the RSA who suggested I became a contact in myarea. I often speak with newly diagnosed sclerodermasufferers on the phone, and send them information about theRSA through the post. I also give them a form to join sincebeing a member benefited me enormously when I wasdiagnosed. As well as being a local contact I also give talks tolocal groups about the condition and make them aware ofwhat it is and what’s it’s not. I hope in this way there is noconfusion about the conditions – at least in my area! I havealso given lectures to the Chiropody Association at their

national conference and continue to do so locally andnationally.Kate Owen

Portsmouth andHampshireIn December 2003, when I was 32, Iwas diagnosed with Limited SystemicSclerosis (CREST) at a Rheumatologyoutpatients appointment. I left thehospital utterly bewildered after beingtold “Oh – we don’t see many of thesehere – it’s rare”. To understand more Isought information and thankfullydiscovered the RSA. I obtained moreinformation and support from the

Cheshire based team than from anywhere else. I soonbecame a member and relished the ‘Hot News’ that droppedthrough the letterbox. Before too long, through the ‘Pen Pal’column, I became friends with an elderly widow, Rene, 80miles away. We wrote to one another, spoke frequently on thephone and as time progressed we enjoyed short visits andshe became a dear friend. Sadly my fellow sufferer and friendpassed away in October 2010. After this I decided to start alocal support group. If you would like to chat on the phone,contact me by e-mail or even ‘snail mail’, I would love to hearfrom anyone. We could arrange a gathering at my home inPortsmouth or at a location along the central south coast.Alison Wright

EastleighI started an RSA group over 20 yearsago and some of the original membersare still with me. I started the groupafter Anne put me in touch with otherRSA members in the Hampshire area. Irang around the members and sentChristmas cards to some of them to letthem know that I had started a groupand that if they wanted to get involvedto give me a ring. Our meetings areusually at my home, with about 7-9 of

us coming regularly. Sometimes folk call me and just want totalk about problems associated with Raynaud’s andscleroderma, and often want to know if I have experiencedsimilar things. They are usually quite relieved to know othershave gone through similar symptoms and that I understandhow they feel. The meetings are very informal and people often say it is theonly time they can openly discuss how they are coping, asthey often feel that others have little understanding of theconditions. It’s always surprising how many good ideas wecome up with to help each other, for example advice onfootwear, dry mouths, skin creams and bowel problems. Weare always learning more about how to cope. Our meetingsare roughly about every two months, but we know we canalways contact each other in between. I myself have benefitedfrom these meetings and have made many friends as a result. Kathy Allen

News from Local Contacts

Margaret Goff

Gill Holden

Alison and Rene

Kathy Allen

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15

Contacts

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Four or five years ago at an RSAconference, my wife Shirley and Idiscovered there were others fromWorcestershire in attendance, so wesuggested that they might like to cometo a meeting at our house to share ideasand experiences, and to support eachother. Then, at Anne's suggestion, weadded our name to the list of localsupport groups in Hot News. We nowhave members attending from all overWorcestershire, as well as one or twofrom North Gloucestershire. We now have about 14 members, sixwith scleroderma, and seven withRaynaud’s – and me with neither! Wehold three or four meetings a year andone of these is usually a planning andstrategy meeting for our stand we takeannually at the Pershore Plum Fair overthe August Bank Holiday. This standaims to raise funds for, and awarenessof, Raynaud’s and scleroderma. Anothermeeting follows fairly soon after the RSAannual conference so that those whohave attended the conference can feedback information and updates to thosewho didn’t. One member of the group, JonathanSmall, recently trekked up Kotapaxi, aSouth American volcano, in memory ofhis mother who died several years agofrom scleroderma. We have held twoopen events as a result, one was a Quiznight, and then another one afterwardswhen he showed us his stunning slides– followed by another jacket potatosupper, and a session of 'knock-out'skittles! We have all become closefriends, and we have a lot of fun! John Lynch

Burton-upon-TrentThe Burton-on-Trent Support Group isnow in its 7th year, way behind Annewith her thirty years plus, but still raisingawareness of our conditions. Since ourAGM in February our monthly meetingshave ranged from a speaker from theDepartment of Works and Pensions totwo local Community Volunteer Servicestalking about their roles within voluntarysector groups. Future speakers are Ian

Dawn, the son of one of our committee,who donated a kidney to his sister whohas Lupus, and a joint meeting with anOccupational Therapist and a Skin Careand Camouflage Nurse Specialist.We held a fundraising Bingo night inMay which was well attended by thelocal community and have beeninvolved with other events, such as theSouth Derbyshire Liberation Day andholding a stand in the Hospital foyer tosell goods and give out leaflets. Ourmain fundraiser this year will be a TributeBand evening on November 24th at theGuild Hall in Burton-on-Trent. We arealso hoping to visit The Houses ofParliament for a tour on 26th Novemberwhich will be followed by afternoon teawith our local M.P.’s. Sheila Jackson and Helen Nutland

FifeMy journey with Raynaud’s started over30 years ago when I realised my handswere turning from white to blue when Iwas outside. I was referred to Ninewellshospital in Dundee where I was seen byProf Belch and now receive Iloprosttreatment. As a local contact I get manytelephone calls from people, and oftenthey are asking whether there is aheating allowance available forRaynaud’s sufferers. I tell them thatsadly there isn’t but advise them onways of keeping warm that have helpedme. I have met many people withRaynaud’s, all with different stories andit’s good to share. To help myself I try tokeep active with hill walking, gardeningand occasionally skiing. Do get in touchif you would like to chat. Rose Bevan

Merseyside I was diagnosed in May 2005 withScleroderma and Raynaud's. I had afabulous 2004; I had got married andhad honeymooned in Mexico. However,on returning to Britain, I didn't feel welland ended up in the Liverpool Royalwith Pericarditis. Apparently, thiscondition can be a symptom of Lupusand scleroderma and so the doctorsstarted to look at the ANA and otherfactors in my blood. I was bemused bythe possibility of having an auto-immunecondition and once the extra water haddrained from my heart, I was dischargedand felt fine.Then on a country walk, myhands turned a deep blue and I knewthere was a problem. My diagnosis ofscleroderma soon followed. Now I livewith tight skin, which has eased a littleover time, sore joints, crooked handsand joints, lack of stretch,heartburn/acid reflux, microstomia(small mouth) digital ulcers and

Raynaud's. But I remain very positive. Ihave two young children, a fabuloushusband and work as an Englishteacher. I have been in contact withseveral people in my area via email andtelephone and in person and am alwayshappy to talk. Helen Lingwood

Shirley & John Lynch LOCAL CONTACTSBurton on Trent, Helen Nutland

01283 566333 Ext. 5032Bristol & Bath, Margaret Goff

01454 310225Email: [email protected]

South Cumbria/ Ruth RandallNorth Lancs 01524 903493

Email: [email protected]

Eastleigh, Kathy Allen 02380 610678

Essex, Maureen Lucey 01255 473 309

Fife, Rose Bevan01382 552272

Knaresborough, Tony Overend01423 862551

London, Ruta Rackaityte07702 245068


Manchester, Gill Holden 01942 877259

Merseyside, Helen Lingwood 0151 280 119407751 333 633


North East, Jessie Pickering01388 527840

N. Ireland, Patience Bradley02890 592370

Mobile: 07966 416553North Wales, Kate Owen

01492 515834Portsmouth and Hampshire,Alison Wright02392 367960 & 07986 900262Rickmansworth, Marilyn York

01923 286780Shipley, W Yorks, Bev Myers

07903 448038Suffolk & North Essex, Jacky March

01394 286637Surrey, Fay Collings

01737 762005Worcestershire, Shirley Lynch

01386 553392


Is

PUBLISHED BY THE RAYNAUD’S & SCLERODERMA ASSOCIATION

112 Crewe Road, Alsager, Cheshire ST7 2JA

Tel: 01270 872776 Fax: 01270 883556 Email: [email protected]

Websites: www.raynauds.org.uk www.scleroderma.org.ukEDITOR: Anne H Mawdsley MBE

Raynaud's & Scleroderma Association © Copyright 2012. All Rights Reserved.Charity Reg. No. 326306

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hot news issue 121

Documents

research study

patients withscleroderma

cliniciansand patients

scleroderma systemicsclerosis

limitedform of scleroderma

professor ariane herrick

professor chris denton

professor damecarol