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hot newsIssue No. 114 Volume 4 2010

PLEASE SUPPORT THE ‘COOL MILLION’

MP Supports ‘Cool Million’ AppealFiona Bruce, Conservative MP for Congletonconstituency, launched the Raynaud’s &Scleroderma Association’s (RSA) ‘Cool Million’Appeal at the RSA Head Office in Alsager.

In support of the 'Cool Million' Appeal Fiona Brucesaid: "This is a remarkable campaign led by aremarkable organisation. I encourage everyone togive generously to the Raynaud's & SclerodermaAssociation, who fund research in the UK and provideinvaluable support for those experiencing theseconditions."

Photograph courtesy of Jeremy Condliffe, Congleton Chronicle Series

RSA Research GrantsThe total commitment to research at thispresent time is £959,085.00 which includesthe following grants awarded in 2010:Addenbrooke’s Hospital - Assessment ofHand Ischaemia Outcome Measures inpatients with Systemic Sclerosis - 6 monthproject - Dr Frances C. HallSalford Royal Hospital (Hope Hospital) - 50%Funding of a Nurse Specialist (Liz Wragg) - 2 year funding - Dr Ariane HerrickKing’s College London - Does endoglinmodulate the angiogenic switch of TGF-beta signalling in systemic sclerosis? - 1 yearproject - Dr Sarah HowatNewcastle Upon Tyne University - Functionalanalysis of Tumor Necrosis Factor-alphaReceptor 1 and 2 in mononuclear cells inSystemic Sclerosis - 2 year project - Professorvan Laar/Thomas HeugleThe RSA is also currently funding researchand welfare projects at the following centres:RNHRD, BathBrompton Hospital, LondonRoyal Free Hospital, LondonSalford Royal Hospital (Hope Hospital)A full list of active and completed grants can beviewed on our website

www.raynauds.org.uk

The Gut in SclerodermaOur gastrointestinal tracts or ‘guts’ areessential to all of us in our day-to-day lives,but this part of the body is often taken forgranted or over-looked. We rely on normal gutfunction to obtain nutrients which provide‘fuel’ for healthy organ function, to obtainwater which is essential for life, and toeliminate waste products. In addition, eating isan important social activity and should be asource of daily pleasure to all of us.80-90% of people with scleroderma have gutproblems, and all of the gastrointestinal tractcan become involved in scleroderma - fromtop to tail.The principal problems with the gut inscleroderma are: Abnormalities in the movement of the gut

wall, and so propulsion of food/waste through the gut, due to:Problems with nerve supply to gut wallMuscles in the gut wall wastingThickening of the gut wall with fibrosis/collagen

Blood vessel abnormalities in the gut:Telangiectasias: dilatation of the smallest blood vesselsRaynaud’s phenomenon: poor blood flow due to blood vessel spasm.

Continued on page 5

If there is a letter ‘Q’ before your membership number, which appears above your addresson the carrier sheet, then it is time for you to renew your membership subscription on 31stDecember. It would help us greatly if you could renew as soon as possible. A renewal formis on the reverse of the carrier sheet. If in any doubt just give us a call on 01270 872776.

Renewal Time!

Brian Medley and his daughtersSuzan and Karina, present acheque for £1,000 to AnneMawdsley at the conference, inmemory of Brian’s wife Sylvia.

Cardiff Meeting

Rheumatologist Dr Tom Lawson,who spoke at our regional meeting inCardiff on the 15th September. Thismeeting was well supported andmembers gained a great deal ofinformation from Dr Lawson duringquestion time, not only on theircondition but also about referrals.

Professors Jaap van Laar andJeremy Pearson, Dr John Paulingand Dr Frances Hall.

Welcome

CHIEF EXECUTIVE & FOUNDERAnne H Mawdsley MBE

PRESIDENTProf. Dame Carol Black DBE

TRUSTEESBarry Hicks, Joanna KaddishKevin Lafferty, Jeremy Pearson

PATRONS

Sharron Davies MBERoger Jefcoate CBEVeronica, Lady Piercy

Nick RossDavid Wilkie MBE

MEDICAL ADVISORS

Prof. J Belch; Sister S BrownProf. C Denton; Dr. A L HerrickDr. C Lovell; Dr. R MacDonaldProf. P Maddison; Prof. R MootsProf. D Scott; Prof. A Silman

Dr. D Veale

Cool MillionSince the ‘Cool Million’ was launched wehave to date received over £115,000 indonations. My sincere thanks to everyonewho has helped in this way. There is still along way to go to reach a million by 2012but if we all work together I am confidentthat we will reach our target.

Remember that it isn’t only raising moneywhich is important but also creatingawareness. We have posters and leafletswhich we can send to anyone who can helpto promote the work of the RSA

How will the money be spent?You will have seen quotes from ProfessorDame Carol Black and Professor ChrisDenton in the Cool Million leaflet and in thelast issue of Hot News, suggesting whichareas of research are most in need ofinvestigating further.

We really do want to hear from you, ourmembers, as to which areas you would liketo see prioritised for this funding. One ofour greatest aims is to improve the qualityof life for those who have these conditions.

Help with PostageOne of the RSA's largest expenditure ispostage. It is easy to forget that a 1st classstamp costs 41p and a second class is 32p.Every month we are inevitably paying outhundreds of pounds for postage stamps -but if members could send an SAE or astamp if their letter requires a reply, it wouldreally help to save us money. Alternatively, contact by email is thecheapest way to correspond and we arehappy to reply to members by emailproviding you give us your email address.

Membership RenewalIf your membership is due for renewal,please complete the form which is on thereverse of the carrier sheet which has youraddress on. This year we would be grateful ifmembers could inform us if they require areceipt for their renewal and/or donation. Ifwe were to acknowledge every singlecheque it would cost us hundreds ofpounds. Maybe this year you could set up aBankers Order ensuring that yourmembership will continue to run oralternatively take out a multi yearmembership? We do value your support andare here to help in whatever way we can.

Gift Aid it!When making a donation if you are ataxpayer please help us by signing a GiftAid declaration. It really does mount up. Forexample a donation of £25 is worth £32 ifGift Aided. This is particularly relevant whenpeople make donations in lieu of flowers inmemory of loved ones which often resultsin hundreds of pounds. We are mostappreciative for all donations and cansupply Gift Aid forms should you needthem.

Annual DrawThis year’s annual draw has raised over£10,000 and as this newsletter went to printthe money was still coming in. Winners willbe notified and a list will be in the next issueof Hot News. In the meantime if anyonewould like to receive a list of winners pleasesend an SAE with your request.

Raynaud’s Awareness MonthPlease help to create local awareness inyour area during this month. Do let us knowif you would be prepared to help in any way

by putting up posters, displaying leaflets orbetter still, by giving a case study which canbe used for the media.

Annual ConferenceThank you to everyone who sent usfeedback on this year’s conference.Without exception we were told it was thebest yet with over 100 people attending. Itwas good to meet new members andrenew acquaintances. All the speakerswere excellent and many delegates left theweekend with food for thought, knowingthat with such a devoted group ofconsultants in the UK, things can only getbetter in the future.

Regional MeetingsMeetings were recently held in Cardiffthanks to Dr Tom Lawson and in Bathwhere Sister Sue Brown organised ameeting at the RNHRD. We will beorganising further regional meetings nextyear. Professor van Laar has offered to holda meeting at the James Cook Hospital inMiddlesbrough and there will be other localvenues, so do watch Hot News for details.

Percy’s TravelsWe would like to reintroduce the Percy traveltheme, where people take photos of Percy atdifferent venues across the UK and onholiday around the world. Please do send usany photos, especially unusual ones!

New Team MemberOn 1st September we welcomed HannahThomason, who joined the team as aSupport Worker, at Head Office. She isbeing funded by the Government Access toWork Scheme.

DISCLAIMER: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.

HEAD OFFICE: 112 Crewe Road, Alsager, Cheshire ST7 2JATel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk Charity Reg. No. 326306

Anne H Mawdsley MBE

As winter approaches make sure that you are well prepared! Let us hope that it will not be

as long or as severe as last winter. Our online shop is constantly taking orders for heating

aids, silver fibre garments etc. and we have been receiving a record number of enquiries.

Hopefully this is as a result of our awareness campaigns, highlighting both Raynaud’s and

scleroderma and encouraging people to seek help and advice early on in their condition.

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Dear Readers,

AnneWith warmest wishes

I would be grateful if you would tell me ifthere is any connection between Raynaud’sand carpal tunnel syndrome? I have alwayssuffered from white fingers and I know mymother did too. It is not too bad except invery cold weather. Last year I was told I hadsevere carpal tunnel but it has recently gotworse and is very painful. I am waiting for anappointment but I wondered if there was aconnection and if there is anything I coulddo to ease the pain.There is no direct relationship butinflammation around the joints andtendons in connective tissue disease canlead to pressure on the median nerve atthe wrist which causes carpal tunnelsyndrome. Many connective tissuediseases are associated with Raynaud’s sothere is an indirect link. In additionRaynaud’s phenomenon may aggravatethe symptoms of carpal tunnel syndromeeven though it does not cause theproblem.

I have limited scleroderma and have recentlybeen aware of what I realise is calcinosis inmy fingers. What intrigues me is that some ofthe little hard nodules are like pieces ofbone when they break through the surfacewhereas at other times it is more like acreamy substance, often surrounded by redinflammation and of course are very painful.What is the difference between the hardcalcium and the soft version?Calcinosis describes the formation ofcalcified material under the skin. It occursin a number of medical conditionsincluding scleroderma and is common in the limited subset of the disease (it givesthe “C” to CREST syndrome, an oldfashioned medical name for limitedscleroderma). Calcinosis probably occursdue to abnormal healing of damaged or inflamed tissue and especially occurs at sites of minor trauma or pressure on the skin. Laboratory analysis confirms thatthe calcium in calcinosis is in the sameform as found in bones. Howeversometimes it starts as a softer liquid formthat hardens into lumps. This probablyreflects chemical modification analogousto the hardening of bones as they form orrepair.

I have Raynaud's and one consequence ofthis is that I get chilbains very badly. I havechilblains at the moment. I take ginkgobiloba which helps. I have just read anarticle on pycnogel which says that itregulates the production of nitric oxide,which is involved in blood vessel dilation.Does this mean it would benefit Raynaud'ssufferers by improving blood flow to thefingers and toes?Several of the treatments that are used inRaynaud’s phenomenon work byincreasing the activity of nitric oxide or itssignalling pathways. This includes GTNointments and agents such as sildenafil. Itshould be noted that these drugs are notlicensed for Raynaud’s but there areclinical trials ongoing that may, if positive,lead to more treatment options that work inthis way.

My wife suffers from angiosarcoma on herscalp and we wondered if there was anyconnection with her Raynaud's as both areconcerned with small blood vessels in theskin. I am not aware of any direct connectionbetween these two medical conditions, butinterestingly there are some reports in themedical literature of angiosarcoma of theliver associating with Raynaud’sphenomenon in patients exposed to thechemical vinyl chloride. The fact that bothconditions involve small blood vessels isprobably just coincidence.

I have been told by my GP that in future, theywill not be supplying enteric coatedprednisolone. Will this cause a problem withmy stomach? In theory there is no difference between theeffect of enteric coated (EC) or non-ECprednisolone. Some specialists believe thatnon-EC is superior because the absorptionfrom the gut is more consistent. However, the EC preparation may be associated with lessindigestion. Most patients taking prednisolonewill also be prescribed a medication to preventindigestion. Therefore, generally it would notbe expected that non-EC would cause aproblem but if it does you should discuss withyour doctor and ask whether you could beprescribed the EC preparation.

My daughter and I have recently been on awalking holiday during which the weatherwas cold and miserable. A strange thinghappened on our return to base on the lastday. My daughter who is 42 said her handswere numb and tingling and they hadchanged colour. She went to the doctor whosuggested that Raynaud's could be theproblem. Can Raynaud's come on suddenlylike that?Raynaud’s phenomenon occurs when theblood vessels supplying your extremitiesnarrow in response to cold or emotionalstress. It leads to colour changes withblanching (white) of the fingers and laterblue discolouration and after an attack thefingers can become red. Loss of sensationor altered sensation occurs as the nervesin the hands have insufficient blood supply.These changes reverse when the attackpasses. The most common age to developthese symptoms is as a teenage or youngadult. However, it can occur at any age.Sometimes there have been mildsymptoms for several years and only whenyou get especially cold or have exercisedin cold conditions does the Raynaud’sbecome obvious. If these attacks persist orif there are any other symptoms then yourdaughter should see her doctor asRaynaud’s can be the first symptom of anunderlying condition such as a connectivetissue disease.

I have scleroderma and have also been toldthat I have coeliac disease. Having readarticles in Hot News I wonder if in fact mybowel problems are linked to sclerodermaor can you have coeliac disease as well asscleroderma?

Scleroderma is one of the diseases inwhich overactivity of the immune systemoccurs and this is reflected in blood teststhat demonstrate antibodies that can bindto your own tissues. Other similar diseasescan occur in patients with an overactiveimmune system, so-called autoimmunediseases. One of these is coeliac diseasethat results from immune damage to thelining cells of the small bowel and an‘allergy’ to wheat and other glutencontaining foods. Coeliac disease causesdiarrhoea, weight loss and bloating of the abdomen. However, similar symptomscan occur due to scleroderma and so tests should be performed to determinethe cause of the problem. If coelic diseaseis confirmed (usually a blood test and an endoscopy are needed to make the diagnosis), then symptoms mayimprove a lot by following a gluten-freediet.

Doc Spot

Your Questions Answered

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

Professor Chris Denton FRCPConsultant Rheumatologist, Royal Free Hospital

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ConferenceAnnual Conference 2010 Report

Ann House and Ron Bushby Robert and Loraine Limond Elaine Todd and Annie Hartland John and Susanne Cleeves

It was wonderful to see so many delegatesat our 28th Annual Conference at theRamada Hotel in Chester. Some peoplehad attended in previous years whereasothers came for the first time. Manymembers arrived early on the Fridayafternoon so that they could have time toexplore the historical city of Chester.Others relaxed in the hotel making themost of the excellent facilities including awarm swimming pool.The evening meal was an opportune timefor members to catch up with old friendsand make new acquaintances. After dinnerFiona Trotter said a few words about theimportant role which fundraising and themedia plays in helping to raise awarenessabout Raynaud’s and scleroderma. JoKaddish, Emma Major, Kathy Allen andBrenda Argent talked about theirexperiences of highlighting the conditions. Trustee, Professor Jeremy Pearsonwelcomed delegates and then handedover to trustee Jo Kaddish who chaired themorning session. The first speaker of themorning, Dr Frances Hall, fromAddenbrooke’s Hospital in Cambridge, setthe scene for the day by giving a veryinformative talk entitled, ‘Raynaud’s andRelated Research’, which highlighted thesymptoms and treatments for both Primaryand Secondary Raynaud’s and outlinedsome of the current research.Jeremy Pearson, gave a fascinatingpresentation entitled, ‘The Endothelium inScleroderma’ in which he focused on theimportance of cells that line all bloodvessels. Professor Jaap van Laar fromNewcastle University gave a mostinteresting account of the AutologousStem Cell Transplantation InternationalScleroderma Trial. Dr John Pauling, whohas taken time out of his specialist trainingin rheumatology to undertake a period ofresearch into scleroderma spectrumdisease at the Royal National Hospital forRheumatic Diseases in Bath, presented the preliminary findings of the RSA Dando Fellowship. His research is jointlyfunded by the RSA and the Royal Collegeof Physicians Dando Fellowship.Mr Andrew Clarke, Consultant Surgeon at

Poole Hospital in Dorset gave a verygraphic presentation called ‘Cold handsneed a warm heart...and a workingbottom!’ His presentation was illustratedby video clips of operating techniquesused to alleviate the problem - accepted bythe audience with great humour and thiswas before lunch!! He highlighted the factthat many scleroderma patients wereembarrassed by this problem and itaffected their quality of life on a daily basis.After an excellent lunch, the winners of theDay Draw, which raised £350, wereannounced. We are most grateful to somany delegates who brought raffles prizesfor this event and to those who boughttickets.Professor Jeremy Pearson was chair forthe afternoon session, the first speakerbeing Professor Chris Denton, from theRoyal Free Hospital in London. Hispresentation entitled ‘What our patients tellus - Lessons from the Royal FreeScleroderma Cohort’, explained what hasbeen learned from patient feedback in theScleroderma Unit.The next presentation by Louise Parker,Lead Nurse Specialist at the Royal FreeHospital, updated the audience on theRoyal Free Raynaud’s Clinic and explainedthe important role which it plays forpatients. This clinic is unique in that itprovides support mainly for people whohave Primary Raynaud’s (who maypossibly have signs and symptoms ofscleroderma) but at least if this is the case,they can then be transferred to theScleroderma Clinic under Prof Denton.A truly inspirational talk was given bymember Nicki Hunt, who has had bothRaynaud’s and scleroderma since the ageof 23. She is now 33. Nicki gave a verymoving talk about how she lives and copeswith these conditions. What came overloud and clear was her very positiveattitude during which she emphasised theimportance of making the most of lifedespite the ups and downs that living withthese conditions can bring. This talkbrought tears to many eyes - a verycourageous young lady who has survivedextreme gangrene in her fingers but never

gave up the will to overcome the pain anddistress which this caused, and we weredelighted to see that her fingers have nowhealed incredibly well. Member Brian Medley and his daughtersSuzan and Karina, made a presentation toAnne on behalf of the RSA, of £1,000 inmemory of his wife Sylvia, who attendedthe conference last year and who had beena member of the RSA for many years.Sylvia sadly passed away in June of thisyear.Dr Marina Anderson, from UniversityHospital Aintree in Liverpool gave apresentation entitled ‘The Gut inScleroderma: from top to bottom!” Thisvery much complemented the earlier talkgiven by Mr Clarke and was well received.Anne Mawdsley and Jo Kaddish ended theafternoon session with a presentationentitled, ‘Two Cold Challenges!’. In the first,Anne explained what the Cool MillionChallenge is aiming to achieve and theimportant role which our members canplay in helping us to raise a million pounds,not only by raising funds but alsoawareness. She emphasised that wewould like to hear from members as towhich projects they would be in favour ofsupporting. Anne and Jo then entertainedthe audience with photos, video clips andhumourous anecdotes to illustrate theirDog Sled Challenge in sub zerotemperatures in Finland earlier this year,which raised over £28,000 for research.Saturday evening, as always, was relaxedand informal. Following a delicious buffet,Gill Kenyon and Deborah Warburtondemonstrated self hand reflexology forpain relief, showing delegates how theycould do this for themselves with practice.Our thanks to all the speakers and toActelion Pharmaceuticals UK Ltd, DermalLaboratories and Ultrasun for theirsponsorship towards this conference.

Dates for your diary29th Annual Conference

Chester - 24th September 201130th Anniversary Conference Chester - 22nd September 2012

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The mouthDue to the tightening of facial skin, a smallmouth (or ‘microstomia’) is not uncommonin scleroderma, which, coupled with thefrequent presence of dry mouth (‘Sicca’ or‘Sjögren’s syndrome’) results in difficultiesbiting, chewing and swallowing food, as wellas sometimes troubling appearancechanges. Dental problems are also frequentas a result of microstomia, and careful oralhygiene, artificial saliva/lubrication andexpert dental input are essential. In addition,innovative surgery such as mucosalenhancement may be helpful in some.

The foodpipe/oesophagusThis part of the gut is affected in 80-90% ofpeople with scleroderma, with symptoms ofdifficulty swallowing, heartburn/indigestion,waterbrash, nausea, poor appetite and/orweight loss. If investigations are required(and frequently the diagnosis of oesophagusinvolvement in scleroderma is evident fromsymptoms), your doctor may request abarium swallow Xray; gastroscopy (or‘OGD’), and/or manometry, which measurespressures in the foodpipe and how the gulletmuscles are working to propel thefood/waste through as well as acid levels inthe lower foodpipe. Other more specialisedtests may be arranged in some centres.

A number of consequences can result fromoesophagus involvement in scleroderma:food can stick in the gullet, an hiatus hernia(dilatation lower foodpipe) often occurs,inflammation can occur in the foodpipe(oesophagitis) or stomach (gastritis), ulcers or erosions can occur in theoesophagus/stomach, anaemia may resultfrom blood loss from ulcers, erosions and telangiectasias (tiny blood vesselabnormalities), and aspiration of stomachcontents into the lungs may result in lungdamage.

TreatmentTreatment aims to improve symptoms andprevent damage.

Simple advice, such as eating multiple smallmeals, avoiding fatty foods/alcohol, raisingthe head of the bed, stopping smoking andavoiding eating before bed are all very

important. However, medical treatment withtablets called ‘proton pump inhibitors’ (or ‘PPIs’, such as omeprazole, lansoprazole,pantoprazole, esomeprazole, etc.), are oftenextremely effective, although it is to be notedthat at 2 to 3 times the ‘usual’ dosage is often required. ‘Promotility’ drugs (e.g. domperidone, erythromycin,metoclopramide) may help the food/wastethrough the gut in some. In a few stubborncases, an operative approach to reflux maybe required (Nissen fundoplication, whichcan now be done by ‘keyhole’ surgery). Inaddition, we need to remember that uppergastrointestinal problems are common in allpeople, whether they have scleroderma ornot, and sometimes we find the common‘helicobacter’ bug (which causes ulcers)which responds to a course of antibiotics. Inaddition, some may find alternativetherapies, such as acupuncture and TENs,helpful.

The small bowelSymptoms from the effects of sclerodermaon this middle part of the gut includeabdominal pain/bloating, diarrhoea, palemotions, difficulty flushing motions,constipation/obstruction, weight loss andmalnutrition. Your doctor will carefullymonitor your weight at each attendance, andmay organise a number of tests (e.g.abdominal Xray, barium swallow and followthrough Xray, gastroscopy/duodenoscopy/small bowel aspirates & biopsies, breathtests for bacterial overgrowth, measurementof fat levels in motions, abdominalultrasound).

As a consequence of middle gutinvolvement in scleroderma, the followingmay result:

Overgrowth of the usual bacteria in the gut:

Stops bile doing its essential job and allowing breakdown of fat

Stops nutrients in the bowel being processed and absorbed, and

Results in malnutrition

Thickened bowel wall: preventing absorption of nutrients

Poor movement of the gut wall: resulting in sluggish motions and obstruction

Pneumatosis cystoides – air filled cysts in gut wall, usually asymptomatic

Small bowel problems may be helped bytreatment with cyclical antibiotics,medications to promote gut motility,‘parenteral nutrition’ via gastrostomy/jejunostomy (i.e. special feed directly intothe stomach or jejunum), ‘TPN’ or totalparenteral nutrition (i.e. special feed directlyinto the veins). In rare cases, surgery may berequired.

The large bowelThis part of the gut is frequently affected inscleroderma, resulting in constipation/bloating. Wide mouth ‘diverticulae’ or‘outpouchings’ of bowel can occur and may occasionally result in perforation or abcesses, but diverticulae are also common in people withoutscleroderma. Large bowel problems may beinvestigated with barium enema Xray,sigmoidoscopy/colonoscopy (a cameratest) and/or biopsies.

Treatment is largely symptomatic. A dietaryplan should be devised based onsymptoms:

Constipation: lots of water, avoid high fibre laxatives/food

Diarrhoea: avoid lactose, add soluble bran, anti-diarrhoeal (loperamide)

The back passage (anus/rectum)Due to reduced capacity and tone at the back passage, symptoms ofconstipation or incontinence may occur.Incontinence is under-recognised inscleroderma. Investigations are not oftendone, but anorectal manometry may berequested to measure pressures at theanus/rectum abnormalities.

Treatment of the gutTreatment is usually symptomatic andphysiotherapy may help. In some, a sacralstimulator or specialised operation mayrelieve symptoms.

So what is the future?We are working towards the important goalsof:

Improving awareness, particularly of lower gut problems

Improving assessment and measuresof bowel problems

Improving treatments:

By optimising availabletreatments

By developing new treatments:

To improve specific symptoms

To modulate the underlying disease process:

Preventing progression of/reversing the blood vessel problems

Preventing progression of /reversing thefibrosis

Stopping inflammation / reversing immune system abnormalities

The above is a summary of Dr MarinaAnderson’s presentation at our annualconference.

The Gut in Scleroderma - from Top to Bottom!

Dr Marina Anderson

Continued from front page...

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When Anne first asked me to do this presentation my immediatereaction was 'Really? Why me? What have I got to say of anyinterest?' I count myself as one of the lucky ones so it took a littlewhile and persuasion from friends, to realise that actually, I havebeen through a fair bit over the years and I do deal with stuff everyday but it's just become part of me and everyday life. But to somethis may all be new and maybe I can help others by just sharing myexperiences.

I was diagnosed with Raynaud’s 13 years ago, aged 20. There hadbeen a couple of defining moments when I realised my circulationwasn't quite right. I'd been working for a retail company and had thetedious task of working in a cold warehouse, pre Christmas, for salepreparations, marking down the stock. Everyone else seemed tomanage with the temperature, except me. My hands were blue, andso numb I couldn't hold my pen. Another time I was on holiday inCalifornia - it was 80 odd degrees in the sun but a slight breeze orthe air conditioning would send my fingers and toes freezing coldand blue.

ReferralThree years later I was lucky enough to have a GP who had theinsight to refer me to a rheumatologist at Addenbrookes inCambridge, just in case there was something more to myRaynaud's. After blood tests and a capillaroscopy, I was diagnosedwith scleroderma. Of course my parents and I had done our internetresearch and had scared ourselves something silly with what wefound, so when the consultant confirmed it, we were devastated.How do you process the fact that you have a chronic debilitatingcondition that could affect you for the rest of your life, when you're23 years old and have all to live for? I had to tell my boyfriend, myfriends, my colleagues. I wanted them to be aware of what couldhappen to me but I wanted to protect them too. I didn't want themto be as terrified as I was.

So first I had the standard tests; a heart echo, lung function andchest x-rays. The results of these were all ok, and as far as I wasconcerned, I really only had the Raynaud's to deal with, so I carriedon with life, bought a flat, got a new job, all with numerous fearsnagging deep in the back of my mind - what would become of mein the future? How would the disease progress? How will it affect myeveryday life?

I was told that every case was different but there were a few pathsthat the disease generally followed. I was pointed in the direction ofthe Raynaud's & Scleroderma Association and was told I couldmeet others in the same boat, but I didn't want to then. I didn't wantto see or hear what the condition could potentially do to me - thatwould make it all too real and scary.

Changes were becoming apparentTwo years later, aged 25, changes in me must have becomeapparent. The company I worked for were keen to have Health &Safety and the ergonomics team look after me. My fingers began tochange, stiffen - and odd things began to happen, silly injuries andother tell tale signs that only made sense years later. Not willing toface any of it, I decided 'the disease wouldn't beat me’ and I wentoff travelling the world with 2 of my best friends! It was only yearsafter my return that my parents, specialists and friends said theyknew it wasn't the best idea I'd had but they knew they wouldn't beable to stop me from going.

We managed northern Thailand, Bangkok, Ko Samui, Vietnam andSingapore. It was a fantastic experience, despite my struggles butafter 9 weeks I was forced home. I had no energy, my joints andbones ached. I was tired all the time, not hungry, finding it hard tobreathe but blaming the humidity. I wasn't sleeping and I was losingweight by the day. I couldn't bend down to put my shoes and sockson, I struggled to lift my arms to brush my hair and I could no longerlift my rucksack. But I didn't want to go home, it felt like giving in tothe disease, failing, my fears were becoming reality. When I gothome I was a mess; I only had the energy and mobility to sit on thesofa all day - my joints and muscles hurt, I couldn't get comfortablejust sitting or sleeping, I was weak and down to around 7 stone inweight. I could hardly walk or get dressed. After a lot of persuadingI gave in and went back to my consultant at Addenbrookes, whereI was promptly admitted to hospital. I had tests galore; bloods takenvirtually every day, tests for tropical diseases, bone marrow biopsy,muscle biopsy, liver biopsy, CT scans, a barium meal, endoscopy,to name but a few. No stone was left unturned. Sticky blood wasdiscovered, I was also diagnosed with Lupus, myositis andpernicious anaemia, finally concluding: mixed connective tissuedisease. I was in hospital for six weeks.

MedicationI was given intravenous steroids over 3 days to kick start me backinto action and a simple walk down the ward corridor to thebathroom became my greatest achievement in months. I startedhydrotherapy to help build my muscles and gain strength. I wenthome with a mountain of medications, a cocktail of steroids,immuno-suppressants, blood thinning pills, pills to help mydigestion and supplement drinks. I was issued with a disabledbadge and ferried around in a wheelchair. I was back living with myparents, so they could help feed me up, look after me and generallydo all they could for me. I began physio for my hands andoccupational therapy to provide me with aids to help with everydaylife. I was taught how to try and balance my life-style but myrecovery didn't happen over night - it was a long slow process anda lot to deal with. My life was never going to be how it once was.

Unfortunately, as I was beginning to get back on my feet, myboyfriend of 8 years, broke up with me. I was devastated. I blamedmyself, I blamed my health, I blamed him but do you know what, itcould well be the best decision he ever made. It made me moredetermined than ever, a kind of 'I'll show you' attitude appeared. Iwanted my life to be how it was before the diseases.

I wanted to prove that I could still go out, have fun, have a drink, godancing and I did, but at a price.

Stress and exhaustionMy confidence was at an all time low. I used to easily wear myselfout trying to 'prove' myself; ending up tired and achy, and ultimatelypushing myself to the limits. Stress and exhaustion are not positivefactors for an already struggling circulation. Ulcers and sores on myfingers became more common, and so did the hospital stays forintravenous iloprost infusions and as some of you may know,iloprost isn't a quick fix either - ulcers and sores can still take monthsto heal even after this treatment.

Nicki’s talk continued .......

Nicki Hunt (right) with her parents Michael and Sandy

An Inspirational Talk

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07

I was in hospital at least 3 or 4 times for iloprost that year but in 2005it was a little less and I managed to start commuting, part-time, backinto London for my job. But there was still the ongoing bore ofulcers, sores, infections, endless antibiotics, lancing of nails,bandaging, not being able to use my hands much, and having togo back to my parents for support.

In 2006 age 29, I picked up a muscular-skeletal virus. It hurt tobreathe, sleep, sit still or just about do anything for a good 3 weeks!I couldn't sneeze, yawn, or have a good ole' hearty laugh withoutsharp shooting pains in my chest. Later in the year, with littleimprovement, there was concern it could be the beginning ofpulmonary hypertension, so I was admitted to Papworth Hospital inCambridge for more tests and iloprost. Thankfully it was justpneumonia and slight fibrosis of the lungs. But since then it's beenmy chest that is my tell-tale sign for over doing it. When I get tiredand run down, my breathing becomes shallow and my chest getstight and uncomfortable.

It was around this time that the RSA had a regional meeting at alocal hospital in Essex and I was introduced to the BroomfieldScleroderma Clinic. I could finally have my iloprost infusions closeto home - making the hospital stays so much more bearablebecause it was easier for people to visit.

In 2008 I had a particularly nasty ulcer on the forefinger of my lefthand. I'd already had 2 doses of iloprost that year but it hadn'tseemed to help. It got worse, and went black and the pain washorrific, to the point where it was affecting my sleep andconcentration. I was admitted to hospital again. After several moreweeks of excruciating pain and the blackness increasing, I was toldthere was nothing more the local hospital could do. I was at an alltime low again, not being able to fend for myself, spaced out onpain killers, fearing that I may lose half my finger, whether it be fromamputation or just rotting away. The worries mounted up; would ithappen to other fingers too at a later stage? What was to becomeof my hands?

Feeling brighterI was sent to the Royal Free to see Prof Denton and his team, whereI was taken in for 11 days and a new plan of action was formed;more iloprost, more antibiotics, a stint on statins and a stint onViagra - which has of course, caused untold amounts of laughs. Iwas also referred to have an operation called a digitalsympathectomy on my hand to take away the tiny nerves endingsat the base of my finger, so the blood vessels would remain open.

Finally I started to feel brighter, things were being done again, therewas a little bit of hope, so I grabbed it!

A while after the operation and another dose of iloprost, theblackness scabbed and began to come away. Now I would get theanswers to my fears. What would be left under the scab? Would itbe hollow? Would I lose my nail forever? How grim would it look?Three months after the operation the scab came away and I waspleasantly surprised with what was left. It's not unattractive, just alittle shorter, bent and got an odd looking nail growing on it.

What now?This was the hard part but it's been a bit like therapy for me -reminding myself that these conditions affect me every day and arenever far from the forefront of my mind. It doesn't consume mebecause I don't let it - I find something else to do, busy myself withfriends and family, find myself a project to work on but there's nogetting away from the fact that with my now wonky misshapen stifffingers, most simple things have become a bit of a chore.

There are plenty of gadgets available to help with buttons, undoingjars, chopping and grating food, getting plugs out of sockets butthere are many other simple things that are taken for granted - tryingto use the latest touch screen technology, trying to grip coins andpush them into the car park machines, trying to flush the loo usingthose push button flushes - the circular ones you have to pushinwards or downwards - who invented them? I struggle filling the carwith petrol, because I can't squeeze the pump and as for putting the

butterfly backs on my ear-rings, that can take minutes rather thanseconds, providing I can hang on to them at all. Trying to get a cashcard out of the hole in the wall can also be tricky, with or withoutgloves on. As for reaching into my bag and trying to avoid knockingmy overly sensitive fingers with anything hard or sharp - that'simpossible! I could go on forever with examples. We learn to adjust,though it takes time and can be frustrating but we do it because wehave to. I always find it amazing that I can still type reasonably fast.

Every one of my fingers has had an ulcer at some point but wherethose fingers can't take the touch of a key for weeks on end, anotherone seems to take its place.

Asking for helpI feel like I'm slow at everything now. Getting dressed, going to theloo, eating my dinner. I have got a lot better at asking for help;asking strangers to open a bottle of drink for me and even to thepoint where I've asked a taxi driver to undo the back of my dresswhen dropping me home after a wedding - I'd have had to sleep init otherwise! My friends will automatically take my bags from me,and are ready to do up the fly and button of my jeans whennecessary. But they still call me a nightmare because I am a little tooindependent for my own good at times - they would much ratherhelp than see me struggle but I like to struggle and then ask if I have to.

So what have I learned? Don't hide away from these conditions, talk to people, be honestand tell them how you feel. I always thought that by expressing theway I felt was moaning but you know what, we have a right to sayhow it is. Explaining what the diseases do and how they make youfeel will help people to understand.

They may never fully comprehend what I go through as I open thefridge door or prepare to step inside a supermarket. Or howfrustrating it can be just trying to put on a pair of tights but unlesswe actually explain when we're asked how we are, or what'shappening, how will they ever know? I bet we've all used thestandard “I'm fine” line, which I'd say is perfectly OK to say tostrangers but not to friends and family. Sometimes it helps to behonest, to explain if you're not fine and tell them how you feel.

Admitting you need help in any way or seeking out an 'outsider' totalk to, like a counsellor or psychotherapist, is not a sign ofweakness, it's a sign of strength and courage. If talking doesn'tcompletely help and you need anti-depressants to see you out of abad patch, then there's no shame in that either. In my experience,seeing my psychotherapist is the best thing I've done and I've triedall sorts of things in the past - crystal healing, yoga, acupuncture,flower power, reflexology, etc. but there's nothing like tellingsomeone your fears to make you realise that you are human andsome of your thoughts are only natural.

I recognise now that everyone's problems are their own and itdoesn't matter whether you think yours are big or small comparedto anyone else's, they're yours and you are entitled to feel exactlyhow you feel about them.

For a long time I thought Raynaud’s and scleroderma defined me,but it doesn't. There's so much more to me than these conditions.OK I don't ski anymore, not because of the cold, there's solutions forthat, but for fear of falling and further damaging my hands. I don'tgo on bike rides as I don't wish to risk death by not being able tosqueeze the brakes. I don't play tennis/badminton anymore withoutthe risk of thwarting my opponent with the racket when it slides frommy dodgy grasp. But I can drive, I go to work - I'm lucky that I canwork from home when I need to. I've found I'm quite good at bakingcakes.

It's not easy and can take forever but where there's a will there's away. I can still go out and party with my friends, I still go on holidays,live my life to the fullest I can and of course there's alwayssomething around the corner to test me but I'll deal with that whenit comes to it.

Continued on page 8

08

Conference

An Inspirational Talk

One Stop Raynaud’s Clinic Update

RelationshipsAs for relationships, old friends and family are my comfort zone.They know my history; I don't need to explain myself to them. Isometimes find it hard meeting new people, trusting them. It's myconfidence but I'm getting it back slowly.

But someone new? A new man, even... how will they understand allof this? why would anyone else want my condition to become partof their life? how would they cope with the fact that I often haveindigestion at night and sleep on a hundred pillows? what will theythink of my awkward caresses. Without talking things through withpeople, these issues can fester and get so big in your own mind.Negativity breeds more negativity so try seeking out the positivesand if you find the courage to share your thoughts with someone, itbecomes real and they'll help you to deal with it. Just hearing “whywouldn't anyone want to love you?” can sometimes be just enough.

I've never really dwelled on the 'why me?’ - it's just the way it is. I liketo think that I was chosen to test my resilience, courage andstrength.

I'm extremely grateful to Anne and her team for their hard work,dedication and achievements. So much research is being doneand progress being made because of the Association and thefunds they raise. There's still a long way to go as not many peoplehave heard of Raynaud’s and scleroderma, let alone know whatthey are but that's where we can help; spread awareness, raisesome money for the ‘Cool Million’. In the words of a well knownsupermarket advert - 'every little helps!'

I can't tell you how to cope or how to feel, instead I've just given youa brief insight into my world and it's probably been moretherapeutic for me than you but if anything I've said helps any of youin some small way, I'll be happy that I've done my job.

This article is a summary of Nicki’s conference talk. It had tobe edited slightly to fit into Hot News but without doubt this talkwas the most inspirational one of the conference and broughtmany a tear to the eyes.

Thank you Nicki for sharing your experiences with us.

Clinic BackgroundWhen patients are referred by their GP tothe Royal Free Hospital in London, they aregiven an appointment to attend either theRaynaud’s or scleroderma clinic. TheRaynaud’s clinic has been allocatedappropriate resources and time, the aimbeing to provide expert advice and care forpeople with this condition.

On the dayThe Lead Nurse sees the patients to gain a

full history and make an assessment. The appropriate education,advice and recommendations given are tailored for eachindividual. Tests such as thermography, capillaroscopy and bloodtests are carried out and follow up appointments made.

Practical Approaches Stop smoking

If you have to go out in the cold, wear several thin layers ofclothing rather than one thick layer, as the air trappedbetween the layers will help to insulate your body. Tightclothing should be avoided as this may restrict your bloodflow.

Wear some form of headgear, as a considerable amount ofheat is lost from the head area. The trunk should also bekept warm to protect the major organs of the body.

Heating aids such as hand and foot warmers can be veryuseful (see enclosed mail order leaflet).

Eat for warmth - Your body needs plenty of warming ‘fuel’ ifyou are going to brave the cold. Start the day with a bowl ofhot porridge or cereal with warm milk.

Try to eat lots of small meals to maintain your energy andheat levels. Plenty of hot drinks especially between mealsand before retiring to bed are essential.

Treatment OptionsTreatment remains the most challenging problem in Raynaud’sbut does not always require pharmacological intervention.

Medication Losartan – 25-100mg once a day Diltiazem – 60mg three times a day Fluoxetine – 20-40mg once a day Others available e.g. intravenous Iloprost

Natural therapies GLA (Gamolenic Acid) – 320mg Vitamin C – 500-1000mg Vitamin E – 200-400mg Ginkgo Biloba – 240mg Ginger – 2000-4000mg

After the ClinicThe clinic has an integrated reporting system and follow updepends on what the tests show. A comprehensive letter withspecific information is sent to both the GP and patient. Theservice is well known by the local GP network. However, referralsare taken from further a field and the clinic is constantlyestablishing links with other hospitals.

ConclusionThe Raynaud’s Clinic acts as a ‘One Stop Shop’ in that all investigations are done on the same day. The service provides effective screening and management of a specificpatient group.

Louise Parker, Lead Nurse - Connective Tissue DiseaseRoyal Free Hospital

This article was taken from Louise’s talk at theconference. As a result several members have askedtheir GPs to refer them to this clinic.

Louise Parker

Continued from page 7

09

Fundraising

Wedding Anniversary Celebrations

The above 3 couples have kindly raised a total of £1,300 by requesting donations in lieu of gifts for their special anniversaries

Plum Fair Raises £300 Pennies Make Pounds!

Shirley and John Lynch with Brenda and Les Argent pictured above raised £300 atthe Plum Fair in Worcestershire together with the help from members of their localgroup. Many thanks to all! These photos were taken at our Annual Conference.

Maureen and Jacky Collins seen here withAnne Mawdsley, raised £100 for the RSA bycollecting change using their Percy Box.

Coastal Walk & Line DanceElizabeth Threfall and Kevin Giblin raised £1,075 by taking part inthe Wirral Coastal Walk and by holding a Charity Line Dance.

In the photograph on the right are Kevin with Line Dance TeachersAlison Nicholls, Nick Nicholls, Ena Price, Graham Price andElizabeth. They also sent a donation of £25 from St Joseph’s Church.

RRP

Always read the lab l

Golden Wedding AnniversaryBrenda and Mike Etherington

Diamond Wedding AnniversaryMr and Mrs Ramsell

Golden Wedding AnniversaryAnn and Bruce Whittle

News

10

Last chance to buy your Christmas Cards!Noel Cards

Pack of 10 cards (5 of each penguin design)Size 121mm x 121mm

Price £3.00 per pack (plus p & p)

Pack of 10 Noel cardsSize 228mm x 86mm

Price £3.50 per pack (plus p & p)

Penguin Cards Twin Pack

The wording inside all cards is: Warmest Wishes for Christmas and the New Year • Please include 75p per pack p & pPlease make cheques payable to ‘RSA’ and send to: RSA, 112 Crewe Road, Alsager, Cheshire, ST7 2JA.

Living With Raynaud’sTo many people Raynaud’s just means cold hands - if only! Themajority of our members have Raynaud’s which affects their dailylives. How often do we hear “My doctor told me to buy a warmpair of gloves” or “Just try and keep warm, there is nothing I cando for you.” Not very helpful and could something have beenmissed that a simple blood test could have shown?We know that Raynaud’s can vary from one person to another butI think last winter proved that in the majority of cases, it is morethan just a nuisance but a big intrusion on one’s life requiringmany changes in lifestyle.Making sure the heating is on in good time in a morning helps, asdoes putting clothes on the radiator or in the airing cupboardovernight. Then comes the layers of clothes starting with thethermals - it can take ages to get dressed but layering is essential. Going to work by car on cold winter mornings is no fun! I have justdiscovered that using a thermogel handwarmer can help toremove the thick layer of ice before using a scraper. Even wearinggloves can still be agony for those hands and then the car is coldinside and it takes a while for the heater to have any effect. Thisstart to the day can be a problem for anyone but if you haveRaynaud’s it is sheer misery.Shopping can become a nightmare. The frozen foods aisles insupermarkets are the worst as a change in temperature can bringon a Raynaud’s attack within minutes. Paying for goods at thecheckout is another difficult task when you simply cannot feelyour fingers to handle money. I recently heard of a lady who uses£5 notes but then has to cope with the weight of coins given inchange! There have been times when my hands were so deadand painful that I couldn’t tap in my credit card number. It is difficult to describe to anyone who hasn’t got the condition,just how painful a Raynaud’s attack can be. There are manythings which can help but when you try to lead a ‘normal’ life, it isimpossible to stay in an ambient temperature all the time. TheRSA provides leaflets containing tips on keeping warm as well asa mail order leaflet (copy enclosed), containing ideas for a varietyof heating aids, gadgets and clothing which have proved to behelpful.How many times have you gone out for a meal and sat in arestaurant where the air conditioning is blasting down your neckor travelled on an aeroplane or train where the cool air makes you

feel really uncomfortable? It is bad enough in the summer but whyit is needed in the winter is beyond me. I always carry or wear aneck scarf so that if I am in this situation I am prepared.Tasks around the house can become a challenge - having theenergy to dust and hoover is one thing but it is the everydaysimple jobs such as opening jars, cans, peeling and preparingvegetables, even washing up and drying crockery and cutlery,getting food from the fridge or freezer - milk bottles which crashto the floor (better with cartons) but how do you manage to openthe packaging which many foods come in when you have painfulfingers? With great difficulty is the answer!At this point I should mention feet as it has been highlighted attwo regional meetings lately, that the speakers concentrated onhands and said very little about feet. Of course they are affectedand trying to walk with dead feet is not easy when they are verypainful. Trying to find good comfy shoes is quite a challenge butcertainly worth putting the time and effort in. Chilblains are alsocommon in people with Raynaud’s as they are caused by poorcirculation.It can be very difficult for mums with young children, trying todress youngsters, prepare meals etc. and often having to pushprams and pushchairs on cold days. I also feel concerned for theelderly, especially those living alone, when the cost of heating canbecome prohibitive and many find that they have to virtually live inone room in order to keep warm. Raynaud’s can cause people tobecome isolated and lonely especially during the winter months,as going out is the last thing they want to do. I do hope that our newsletters reassure you by knowing that wedo understand and we care. With careful planning you canovercome some of the problems but it isn’t easy especially asother people often think you just have poor circulation. I amalways happy to talk problems through with members on thetelephone, whether it be Raynaud’s or scleroderma. Speaking tosomeone who shares your problem often helps and at least youknow that you are not alone.If you can help us to create awareness, especially duringRaynaud’s Awareness Month (February 2011) please let us know.

Anne Mawdsley

News

11

Publication costs for this issue of Hot News supported by Pfizer LtdPfizer Ltd have no editorial input or review of the content of this newsletter and the opinions expressed are theopinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of Pfizer Ltd.

Please let us know if you would like your name, email address and/or phone number tobe added to this list.

Informal GroupsIf any members would like to be in touch with others in their area with a view to settingup a local group, please let us know. We now have several small groups who have madefriendships in this way. Member Bev Myers is very keen to set up a group in the WestYorkshire area. Please call Bev on 07903 448038 if you are interested.

LOCAL CONTACTSEastleigh, Kathy Allen

02380 610678

Cumbria, Ruth Randall 01229 835727

Manchester, Gill Holden 01942 877259

North East, Jessie Pickering01388 527840

Fife, Rose Bevan01382 552272

Worcestershire, Shirley Lynch 01386 553392

Burton on Trent, Helen Nutland01283 566333 Ext. 5032

Bristol, Margaret Goff 01454 310225

N. Ireland, Patience Bradley02890 592370

Mobile: 07966 416553North Wales, Kate Owen

01492 515834Shipley, W Yorks, Bev Myers

07903 448038Surrey, Fay Collings

01737 762005

The PrescriptionCharges Campaign

The RSA has joined the campaign toabolish unfair prescription charges.

The Prescription Charges Campaignbrings together 24 charities calling on theGovernment to abolish unfair prescriptioncharges for people with all long-termconditions.

Since April 2009, people with cancer nolonger have to pay for prescriptions. Thisis wonderful news, but many more peoplein need are still waiting. There is plenty ofevidence that many people with long-termconditions currently struggle to afford theirprescriptions, and often choose not to fillprescriptions because of the cost.

Contacts WantedPauline Reece would like to hear fromothers in the Neath area of Wales whowould be interested in meeting for a chat,coffee, support and/or fundraising.

We have several Mums who have youngchildren with Raynaud’s and they wouldlike to make contact with others.

Please write to or email members viaHead Office and we will forward on yourcorrespondence.

The RSA Team Online Shop

Warmest wishes for

Christmas and the New Year

Please note that the office will beclosed over the Christmasperiod and will re-open on 4th January. Orders placed viathe online shop will not bedespatched during this period,last orders being sent out on Tuesday 21st December.However, we cannot guaranteethat orders will arrive in time for Christmas unless ordered theweek before.

NURSE ADVICE LINESSally 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 0207 352 8121(For Lung Enquiries) Beep 7112Steve McSwigganDundee 01382 633 957

The nurse advice lines are not a replacementfor care by your GP but very often it helps totalk to a nurse who can listen and offeradvice. It should be emphasised that the nurses whorun the advice lines also have very busyschedules and therefore on occasions youwill get an answerphone to leave your detailsfor the nurse to get back to you whenavailable. The advice lines are not intendedfor use in an emergency.

(Only available Mon, Tues & Wed mornings)

Karen, Hannah, Fay,

Anne and Fiona

PUBLISHED BY:RAYNAUD’S & SCLERODERMA ASSOCIATION

Head Office: 112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk

EDITOR: Anne H Mawdsley MBERaynaud's & Scleroderma Association © Copyright 2010. All Rights Reserved.

Charity Reg. No. 326306

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