raynauds hot news vol4

In this issue...

Issue No. 122 Volume 4 2012

Liz WraggNurse Specialist

Page 6

When one revisits medical history,it isn’t possible to ignore theFrench doctor who discoveredRaynaud’s Disease - the diseasethat can and will affect the bloodflow to extremities.

Raynaud’s Disease was namedafter Dr Maurice Raynaud, whowas born in 1834. His father was a university professor. With thehelp of his uncle, who was a verywell known doctor in Paris, DrRaynaud was able to gain hismedical degree in 1862.

Continued on page 3

Dr Mark HarberScleroderma Renal Crisis

Page 9

Raynaud’s Awareness MonthFebruary 2013

This is a very significant date in our calendar when we aim to reach many thousands ofpeople who may or may not be aware that they have Raynaud’s or may not have heardabout the RSA and the support and advice which is available to them. Not only do we aimto contact sufferers but also to educate the general public and make them aware of theimplications and problems experienced by people with Raynaud’s. Any help which youcan give in the way of publicity would be very much appreciated. Please let us know ifcould help by putting up posters, handing out leaflets, providing a case study or beprepared to talk to the media. Quite often when we contact members to ask if they will helpin this way and they are very willing but unless we know in advance we are not aware ofthe help which you, our members can provide.

Thanks to everyone who has supported the Cool Million Appeal. We are now in a positionto be able to support even more research into Raynaud’s and scleroderma. It is onlythrough your contributions that we are able to fund projects which otherwise would not bepossible. We have a way to go to complete the Million but there is still time and allcontributions are very welcome.

Annual ConferenceIt was certainly a conference to remember. Excellent speakers, whose reports will appearin future issues of Hot News, the getting together of many old friends and new, celebratingand rekindling friendships and making new ones. We are most appreciative for the timegiven by the speakers, chairpersons etc. to make this such a special occasion.Special thanks to Professor Dame Carol Black who opened the conference and was alsoour after dinner speaker on the Friday evening, where we were joined by guests DavidBriggs, Lord Lieutenant of Cheshire and his wife Michelle, Roger Jefcoate and Veronica,Lady Piercy. See page 7 for further information and photos.

Cool Million Appeal Reaches £850,000

Dr Michael HughesDigital Ulcers

Page 8

Celebrating 30 years 1982 - 2012

30th Anniversary Edition

Dr Maurice Raynaud

Prof Graham HughesConnective Tissue Diseases

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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

To the Future

When I started the Raynaud’sAssociation 30 years ago Isimply had Raynaud’s. Littledid I know where my journeywould lead both me and thecharity.

I am not going to go backover the past but rather focuson the future for the RSA.Members are the core of ourorganisation and I have mademany friends over the years -I would like to thank all of youfor your support.

When I started out on thismission, a charity was set upin a simple way to helppeople and raise funds for research. Times havechanged and there are manyregulations we must conformto. I feel that this is nowtaking up much of my timewhich I would prefer to put tobetter use and therefore Iwant to get back to where Iwas 30 years ago, speakingto people on the phone,helping with welfare issuesand let someone else dealwith the day to day issueswhich arise in running thecharity.

It is for this reason andbecause I feel the RSA needssomeone younger with newideas, who can take thecharity forward, that I amstanding down as CEO at theend of the year and taking ona different role - that of thewelfare of patients. I knowthat the trustees will keep an

eye on what is happeningand I have confidence that Ican leave it safely in theirhands together with that ofthe new CEO, Elect, LizBevins, who will be takingover from me. Liz is veryenthusiastic about her newrole and there will be morefrom her in the next issue ofHot News.

My thanks to everyone forenriching my life over thepast 30 years. My passion forsupporting patients, creatingawareness and raising fundsfor research is still as strongas ever, so I am not leavingthe RSA. I will still be aroundfor as long as I can, to speakwith you on the phone orkeep in touch by email, lettersetc. It is not the end but a newbeginning and I am sure thatyou will all continue to givethe RSA your full support.

Thanks to my staff for theirsupport and contribution overthe years, especially Karenwho joined us 18 years ago and who runs themembership database andonline shop so efficiently.

To our President, ProfessorDame Carol Black, ourPatrons - Veronica, LadyPiercy, who has been a loyalpatron since the beginningand Roger Jefcoate, who hasbeen a constant source ofsupport. Patrons Nick Ross,and David Wilkie also senttheir best wishes for our 30thAnniversary.

Our trustees, have beeninvaluable and here I mustmention Jo Kaddish who wasa long-standing memberbefore becoming a trusteeand in 1994 when she tookon the role of Chair of theTrustees. Who else wouldhave accepted the challengeto join me to take a team ofhuskies across Finland atminus 32 degrees when shealso has Raynaud’s?!

Sincere thanks to all thehealth professionals whohave supported our work andwho we have been able tofund in order to progress withresearch and clinical care. Somuch has been gained overthe past 30 years with the RSA providing a total of twelve million poundstowards research and welfareprojects, in addition to thefunding of nurse specialists.

I would like to say a specialthank you to Professor ChrisDenton who has been alifeline to the RSA, with dailyemails, a regular Doc Spot inHot News and is always onhand when needed. I amdelighted that he has recentlybeen invited and acceptedthe role of Vice President.

Finally I send everyonethe warmest of wishesfor the festive seasonand for the future.

Anne

Anne H Mawdsley MBE

Dear Readers,The Cool Million continues to grow but we still need a realeffort in order to be able to reach our target. Thank youall so much for the support which you have given to thisappeal. It is very much apprecoiated.

Chief ExecutiveAnne H Mawdsley MBE

PresidentProf. Dame Carol Black DBE

Vice PresidentProf. Chris Denton

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 BelchSister S BrownProf. C Denton

Prof. A L Herrick Dr. C Lovell

Dr. R Macdonald Prof. P Maddison

Prof. R MootsProf. 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]

Websites: www.raynauds.org.uk

www.scleroderma.org.uk

Charity Reg. No. 326306

In prehacosoturdisheMahe spheseein sulooheHisgaa typergClethecucostrHemuintsugawaOvsimprocohe sosocohaonstilprothr

Best wishes for Christmas and the New Year from

All of the team at the RSA

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What’s in a Name?

03

In the late 1850s, a 27 year old female,presented with the fingers of both herhands suddenly becoming pale andcold. Over the next few weeks the tips ofsome of her fingers shrivelled up andturned black, causing her great pain anddiscomfort. The doctor who attendedher was an equally young man calledMaurice Raynaud. He was perplexed, forhe was faced with a patient who hadspontaneously developed gangrene ofher fingers with no apparent cause. Sheseemed healthy, there was a good pulsein her wrists indicating a good bloodsupply to her hands, yet her fingerslooked starved of blood and the tips ofher fingers were gangrenous. His medical teaching told him thatgangrene was due to either blockage ofa main artery in a limb, diabetes,typhoid, or poisoning by a fungus calledergot which grows on mouldy rye.Clearly his patient did not fit into any ofthese categories, but she did have acurious history of her fingers turning oddcolours whenever she was cold or understress. He decided that the colour changesmust have been due to some sort ofintermittent blockage of the bloodsupply and that the spontaneousgangrene of her fingertips was in someway connected.Over the next few years Raynaud sawsimilar patients and discussed theproblem with colleagues who had alsocome across the condition. Before longhe had collected the case histories ofsome 25 patients whose fingers, toes, orsometimes the face and ears changedcolour in the cold. Some of the patientshad also developed areas of gangreneon the affected parts. He was however,still unsure as to the cause of theproblem. Raynaud’s Disease goesthrough various stages which is

something that Dr. Raynaud tried todescribe. This included three colourchanges as well as the appearance offlat nails.At around the same time, another French doctor, Claude Bernarddiscovered that arteries, those vesselswhich carry bright red fresh blood allaround the body, are supplied by nerveswhich make them constrict, that is, whenthe nerves were activated the arterieswould decrease in calibre and carry lessblood.

The sympathetic nerves must beoveractive, he thought, making thearteries so narrow that not enough bloodcan get through to the extremities tokeep them alive. When the condition issevere enough gangrene develops butin its milder form the affected areasintermittently turn white or blue andfinally red when the blood eventuallyreturns. In essence, the fingers andanywhere else affected, were beingstrangled or asphyxiated due to lack ofblood! He published his thoughts in theform of a thesis in 1862 called, "Del'asphyxie locale et de la gangrènesymétrique des extrémités" translated as"On Local Asphyxia and SymmetricalGangrene of the Extremities".

While he would never go on to secure amedical position in any of the hospitalsof Paris, his discovery of Raynaud’sDisease perhaps made up for it. Thedisease which is one that is known toaffect the ears, nose, and extremities,was something that Raynaud tried toexplain when he discovered it in 1862. The disease is thought to be hereditaryand at the time that Raynaud discoveredthe disease that would later carry hisname, there was very little to go on as faras prevention or treatment. The onerecommendation that seemed tocontinue into the future was that patientsshould try to stay warm and avoid

consuming anything that would constrictblood vessels.Maurice Raynaud died in 1881 havingsuffered for several years from organicheart disease. He was forty-seven yearsof age at the time of his death. Raynaudwas a man of great integrity, of spotlesscharacter, and recognised for unusualintellectual attainments. He was at thesame time a physician, a savant, aphilosopher and a man of letters.

SclerodermaInvestigation reveals that sclerodermahas been around for a long time. Casesof skin disease similar to sclerodermamay be found in the writings ofHippocrates as far back as 460–370 B.C.Oribasius (325–403 A.D.) and PaulusAgineta (625–690 A.D.), also wrote onthe subject. It is difficult for us to know ifthese were truly examples ofscleroderma because the descriptionswere inexact.

This illustration was taken from theInternational Scleroderma Network (ISN)USA website sclero.orgThe first definite description of thedisease was by Carlo Curzio in amonograph published in Naples in 1753.This account produced considerableinterest in French and English medicalcircles. The account concerns a youngwoman of 17 named Patrizia Galiera,who was admitted to the hospital andassigned to Dr. Curzio. Her symptomsas described by the doctor involvedhardness of the skin (differing in degreefrom place to place), tightness aroundthe mouth, and hardness around theneck. He noted loss of warmth in theskin but no other problem in pulse,respiration, or digestion.Much of the report contains details of thetreatment, which included warm milkand vapor baths, bleeding from the foot,and small doses of quicksilver. After 11months, the skin became soft andflexible, and all natural functions wererestored.

Raynaud’s

The nerves in question were called the sympathetic nerves. Here

at last was Raynaud's answer!

Maurice Raynaud Claude Bernard

Inevitably, the condition came to be known as Raynaud's

Disease. (now called Raynaud's phenomenon or

simply Raynaud's).

Continued from front page


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Doc Spot

My doctor has diagnosed me withRaynaud's. Is it advisable to ask to bereferred to a rheumatologist?

it is sensible to be reviewed by arheumatologist, who can organise bloodtests (especially antinuclear antibody tests)and sometimes blood vessel tests, such ascapillaroscopy (looking at blood vesselsaround the base of the finger nail). If thesetests are normal then primary Raynaud's isthe most likely diagnosis and a drug callednifedipine may be very helpful. If not thereare other treatments available and you candiscuss these with your doctor.

I have had Raynaud's for many years, butthis year I have had to start on B12injections following a blood test. Thenafter a colonoscopy I was told I havecollagenous colitis. Can they all beconnected? I'm worried I might havescleroderma.

Collagenous colitis is a specific medicalcondition in which inflammation in the liningof the bowel leads to bands of scar tissue(collagen) forming just below the surface ofthe lining cells of the large bowel (colon). Itcan occur on its own or associated withother inflammatory diseases and usuallycauses diarrhoea and poor nutrition. Veryoccasionally collagenous colitis has beenreported in association with scleroderma butthis is rare. Although it might just be acoincidence, Raynaud’s could indicate amore general disease, not just scleroderma,and so it would be worthwhile checking thatroutine blood tests (including antinuclearantibodies (ANA) have been performed andto discuss these with your doctor in casemore tests are needed.

I have Raynaud's and my hair is fallingout. Can Raynaud's affect the hair? Doother patients often complain of thinningor hair loss?

Hair growth depends upon a very goodblood supply to the underlying skin and sohair over the extremities may thin in severe

cases of vascular disease. This is morecommon for permanent vascular problemsthan Raynaud's phenomenon which isintermittent. However some medicalconditions that associate with secondaryRaynaud's phenomenon such as SLE(lupus) are associated with thinning of thehair and so if hair loss occurs in associationwith Raynaud's, a series of blood tests maybe requested by your doctor.

Is there any involvement of hearingissues that have been raised orrecognised, relating to Raynaud's orscleroderma?

Hearing is not usually affected byRaynaud's or scleroderma but occasionallysome of the underlying diseases thatassociate with Raynaud's could be linkedwith hearing difficulties. An example wouldbe the effect of connective tissue diseaseson nerve or blood vessel function in theear. SLE for example can causeautoimmune damage to the inner ear. Amore frequent problem in secondaryRaynaud's in scleroderma is thedevelopment of painful hard skin or smallulcers on the edges of the ear. These areanalogous to digital ulcers as Raynaud'scan affect any extremity. They are very soreand may be treated by topical ointments orcreams. Though painful and involving theouter ear, hearing is not affected by thiscommon but under-appreciatedmanifestation of scleroderma.

Is there any connection betweenRaynaud's phenomenon and migraineheadaches? I suffer from both and havebeen told I cannot take some treatmentfor migraine prevention.

There are clear similarities between aRaynauds attack and an episode ofmigraine headache because bothprocesses result from constriction anddilation of blood vessels. In Raynaud'sphenomenon this affects the extremitiesand is triggered by cold or emotional

stress. In migraine the blood vessels in andaround the brain are involved, triggeringfactors are more varied and the mainsymptoms often occur when blood vesselsdilate after an initial spasm. This similarityin mechanism means that Raynaud'sphenomenon and migraine often occur inthe same individuals. Unfortunatelytreatment for Raynaud's can worsenmigraine and vice versa. In particular betablockers that might otherwise be used toprevent migraine are generally avoided inthose with Raynaud's phenomenon as theblood vessel spasm in the hands and feetcan be made much worse.

I have heard that Raynaud’s can belinked to miscarriages in women of childbearing age. I am 34 and my husbandand I are planning to start a family soon.I wondered if it is true that there is a link- and if so, what can I do to minimiserisk?

Raynaud’s is not directly linked tomiscarriages, although it is of course muchmore common in women. The mostcommon form, primary Raynaud’sphenomenon is not associated with risks inpregnancy and often improves when youare pregnant. Some associated conditionssuch as SLE or anti-phospholipidsyndrome can cause increase risk ofmiscarriage. If these conditions are foundthen treatments such as aspirin or heparincan be used to reduce the risk of poorblood flow in the placenta that might leadto miscarriage. However, this is somethingthat needs to be discussed with yourdoctor or midwife. Blood tests can be doneto look for these specific medicalproblems, but fortunately they are notcommon.

Are ulcers a result of Raynaud's,scleroderma or both? Am I destined toget them from Raynaud's?

Ulceration, or breakdown of the skin overthe fingertips or over the knuckles, is acomplication of scleroderma and someother forms of connective tissue diseasesuch as vasculitis but does not usuallyoccur in cases of Raynaud’s in isolation,called primary Raynaud’s. This is probablybecause the blood supply between attacksin primary Raynaud’s recovers enough tokeep the skin healthy.

Your Questions AnsweredProfessor Chris Denton FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

If


05

Doc SpotI first developed Raynaud's about a yearago, and it affected all my fingers. Inrecent weeks it has changed and isaffecting only the tip of the index fingeron my left hand. Is it normal for only onefinger to be affected?

The severity and extent of Raynaud’sattacks and the resulting colour changescan vary depending upon the temperature,emotional stress, medication and otherfactors including whether there is anassociated medical condition such asscleroderma. It is common for only onefinger to be affected in some patients withRaynaud’s, especially in the early stages,although more often other fingers laterbecome involved and so if the conditionhas improved spontaneously this isencouraging.

Is there any correlation between AntiNuclear Antibody (ANA) levels and theprogress or severity of the disease?

Several studies have been performed toexplore this and although the levels of ANAand other antibodies do change inscleroderma, there is no clear associationbetween the level of antibody and progressor severity of the disease. However,specific scleroderma ANA patterns areimportant as they may be associated withhigh or low risk of particular complicationssuch as kidney disease in scleroderma.

Over a lengthy period of time, I havebeen diagnosed with mixed connectivetissue disease, morphoea, scleroderma,Raynaud's phenomenon, fibromyalgiaand osteoarthritis, and was recently toldthat my latest flare-up might bepolymyalgia rheumatica! My GP told meit is 'normal' to keep being diagnosedwith more and more auto-immunediseases/rheumatology issues. Is thiscorrect?

Around 1 in 5 of the patients that we see inour centre who have scleroderma alsohave features of other rheumatic diseasessuch as arthritis, lupus or muscleinflammation and so the concept ofoverlap scleroderma or “mixed connectivetissue disease” is very valid. It may partlyreflect common factors causing more thanone related disorder. However, otherconditions such as osteoarthritis are verycommon and may occur by chance.

Is it possible that morphoea scleroderma

can develop into scleroderma which canaffect organs?

Regarding evolution of morphoea, a formof localised scleroderma developing intosystemic sclerosis, this does not seem tooccur, although sometimes the twoconditions may co-exist, again perhapsdue to shared causes. This is an area forresearch that may shed light on bothconditions.

I was diagnosed with Raynaud's last yearafter my hands started to ulcerate. Myhospital visit to see the rhuematologistlasted all of two minutes and I neverreceived a follow-up appointment. Howwould I know if I have scleroderma?

Diagnosis of scleroderma requires expertassessment including examination of theskin, blood tests and sometimes additionalinvestigations. Almost all patients withscleroderma have Raynaud’s but there arealso many other causes of Raynaud’sphenomenon and so you should clarifywhat tests have been done and seek a further expert opinion from arheumatologist or other specialist if yourGP is concerned.

I have recently been diagnosed withscleroderma and have had very itchyskin. Is this likely to improve or will italways itch like this? Is there anythingyou can recommend to help me?

Itching of the skin can occur for a numberof reasons in scleroderma. It is particularlycommon in the early active stages of thediffuse subset of scleroderma and can bevery problematic. Anti-histamines andother treatments may help and tests forother medical causes of itching should beperformed (e.g. iron levels and thyroidfunction tests). In general itching improvesas the skin disease stabilises but this cantake some time. Itching is less common inthe later stages.

Is the heart involved in scleroderma?

Scleroderma, or systemic sclerosis, canaffect most of the internal organs and theheart is no exception. A small number ofpatients have severe heart involvement thataffects heart function or blood pressure orcan lead to chest pain, fainting, blackouts orbreathlessness. It is important to haveregular tests including ECG andechocardiogram if heart problems aresuspected.

Has there been any evidence to suggestthat alternative or complementarytherapies work? There are very many complementaryapproaches and so it is difficult to make ageneral statement about their usefulness.Some patients with scleroderma trycomplementary treatments. Sometimes theyreport benefit but unfortunately there havenot been robust clinical trials to confirm orassess the degree of effectiveness. Mypersonal recommendation is that anycomplementary treatments should besupervised by a reputable practitioner and Isuggest that such approaches should beadditional to conventional medical therapy.

I had renal failure 3 years ago but wasgiven a plasma exchange instead ofdialysis. Why was this? Plasma exchange is a specific treatment thatremoves some of the proteins from theblood that can aggravate kidney disease. Itis used most often in autoimmune kidneydiseases but sometimes it is helpful inscleroderma, especially if there is overlapwith other processes. Dialysis is only usedwhen the kidneys cannot provide essentialfunctions to regulate salt and water balanceor get rid of waste products and only abouthalf of cases of severe kidney involvement(renal crisis) in scleroderma require dialysis.

I have read about digital ulcers andwondered if it is possible to get ulcers onyour arms?Ulcers can occur in scleroderma at manysites although the tips of the fingers or overthe knuckle joints are the most commonsites. In cases of diffuse sclerodermainvolving the arms there can be ulcerationand this reflects the abnormal skin thicknessand poor blood supply in scleroderma.

I have scleroderma with reflux. What reallybothers me is waking in the night andcoughing. Is there any solution for thecough?The most important treatment for cough is totry and minimise the effect of reflux into theoesophagus from the stomach. Acid reflux isalmost universal in scleroderma and canirritate the voice box, throat and lungs tocause a cough. It especially occurs lyingdown at night. There are concerns that itmay eventually aggravate lung fibrosis orscarring. So treatment should includemedication for heartburn such aslansoprazole or similar drugs. Sometimesother medication is also needed and youshould discuss this with your doctor.

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Clinical1) I continue torun a Nurse-ledRaynaud’s clinicevery other weekon a Friday seeingpatients withRaynaud’s foreducation andadvice. At theseclinics I also see

follow up patients with digital ulcersincluding those who have beenstarted on bosentan for their digitalulcers. Within this clinic I see patientsfrom the other RheumatologyConsultants.

2) I am available at the outpatient clinicsfor advice and I spend time with eachnew patient at the clinic once theyhave seen Professor Herrick, toprovide them with information andadvice on Raynaud's andScleroderma. Within these clinics Iam also reviewing patients withregard to their activities of daily livingand referring them to members of theMultidisciplinary (MDT) Team asrequired. I score the SclerodermaHealth Assessment Questionnaires(SHAQ) and Scleroderma FunctionalQuestionnaires, completed bypatients at their annual reviewappointments: high scores highlightthose patients with significantfunctional limitation.

3) Our patient education days continueto be a success and we will berunning another programme inMay/June 2013

4) We continue to have MedicalInvestigations Unit admission for newpatients to enable them to beadmitted for a short period of time inwhich they can have investigationsthat are required following review byProfessor Herrick. Also in this timethe members of the MDT team seethe patients so they get early accessto the services available. Thisprocess is also used for otherpatients who we feel would benefitfrom a review by the MDT team. Iassist in co-ordinating this process.

We now have access to a one stopMDT clinic if patients do not want tobe admitted, but still want to see theMDT team.

5) Since assisting in the digital ulcerstudy and reviewing patients withdigital ulcers at my clinics, I amstarting a Tissue Viability Module inSeptember 2012 to enhance myknowledge of current wound care toenable me to provide enhancedclinical skills to patients within woundcare.

6) We introduced our PatientInformation Leaflet on theScleroderma Service in Salford RoyalFoundation Trust and patients havefound it useful.

7) The advice line continues and thenumber of calls grows monthly. Thediversity of calls varies greatly. Thesecome from other associationmembers, patients attending Salfordand other medical professionals. AllSalford Royal NHS Foundation Trustadvice line calls and patient contactsare documented on the electronicpatient record.

AdministrationAll the administration roles are as before.After patients are seen in clinic I enter therelevant data from the clinic visitincluding the SHAQ onto the hospitalcomputer system so it is easily availablefor review and comparison at the nextclinic visit. I can also then see if patient’sscores on the SHAQ are higher and Ididn’t see them in clinic, I contact themto discuss if they feel they need furtherreview by the MDT team.

Research/PersonalDevelopmentI assist in current research projects andco-ordinating clinic visits for ESOS(European Study of Scleroderma)patients and collect data for DUOregistry at clinic visits. I am commencinga Tissue Viability Module in September2012.

The patient education programme isgrowing and proving to be successful.Discussion with the other specialist

nurses in rheumatology about aneducation programme within thedepartment to improve awareness ofeach other’s area of specialties andabout the possibility of running aprogramme across the trust to improvewider awareness, is still in the discussionprocess due to restructuring throughoutthe Rheumatology Department atSalford Royal NHS Foundation Trust.

Liz Wragg, Salford Royal NHS FoundationTrust

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Nursing NewsRaynaud’s and Scleroderma Specialist Nurse

Ththeweprenewart

Liz Wragg

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 383 233(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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Conference

This years’ conference, celebrating 30 years, brought together over 100 members,their friends and relatives to celebrate friendship and support for each other. Wewere delighted to be joined by many health professionals and expert speakers whopresented some of their research work over this period of time and which includednew and exciting projects for the future. Future issues of Hot News will includearticles from the speakers. Below are some of the conference photographs.

Quilters Shirley Lynch and IrisMcMillan, made a beautiful quiltillustrating all of Anne’s challenges.This had taken a year to completeand even included the pedalochallenge. Anne was overwhelmedby this wonderful piece of artworkand congratulated the two memberswho had worked so hard tocomplete this masterpiece. It nowhas pride of place on the wall in theoffice.

Trustee Beverley Myers, organised aDVD tribute to Anne, which wasplayed at the end of conference. TheDVD production was presented byRSA Patron Nick Ross and tributeswere paid by members, trustees andhealth professionals, who expressedtheir thanks to Anne for founding theRSA in 1982 and for her enthusiasmand drive over the past 30 years.

Anne would like to say a huge thankyou to Beverley, for her efforts inbringing this complete surprisetogether, to Nick Ross for hiscontribution and to Danny Laceywho was responsible for the filmingsessions at the Royal Free Hospitaland the Manor House Hotel, Alsager.

Copies of this 42 minute DVD areavailable free of charge to all whocontributed and on request, to anymembers who would be interestedin receiving a copy. Please send acheque payable to RSA for £1.50 tocover the cost of p & p.

A Very Special Conference A Tribute to Anne

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Salford Study

“What is a digital ulcer?” mightseem on first glance a simplequestion, but in practice there iswide variation between whatpatients and their cliniciansdeem to be the case. This issuch an important distinction tomake so that patients can beinformed as to the righttreatment at the right time.

Digital ulcers are ulcerations or breaks in the skin, that commonly occur inscleroderma. They may occur in

up to half of patients with scleroderma. These tend todevelop over the fingertips and the small joints of the hands.As many readers may know, digital ulcers can be more thanjust a cosmetic problem. They may be very painful and needstrong painkillers, and they can also become infected andneed treatment with antibiotics.

A lot of work has been done looking at the ways in whichdigital ulcers form. Our current understanding is that this is‘multi-factorial’ in nature. In other words, there is likely to memore than one single cause. There may well be a differentbalance of these causes in the different locations of digitalulcers. Digital ulcers that form at the ends of the fingersand/or toes are believed to be due to mainly problems withthe blood supply, whereas, digital ulcers that develop overbony prominences e.g. knuckles and elbows may be morerelated to the thickening and tension of the skin at theseareas.

There is a wide range of different therapies available fordigital ulcers. These include simple, common sense

measures like avoiding damage or breaks to the surface ofthe skin. The avoidance of smoking cannot be emphasisedenough as it causes the blood vessels to contract, andreduces the blood supply to the skin and tissues. Antibioticsare often needed as many ulcers become infected. Asmentioned above, digital ulcers may be very painful. Variousdrug treatments are available to increase the blood flow tothe skin to help the ulcer to heal. In certain patients, this mayneed to be given via a drip (intravenously) e.g. an iloprostinfusion. An operation is sometimes needed, especially if theinfection has gone down to the bone from the ulcer(osteomyelitis) or the deeper tissue has died (gangrene).

The interest and amount of research that is going on aroundthe world into digital ulcers is really encouraging.

The RSA produces a very helpful and detailed leaflet ondigital ulcers that is a great source of information.

Conclusion

Our understanding of how digital ulcers form has comealong great strides in the past few years. There is now a widerange of effective treatments available. Any suspicion ofinfection of a digital ulcer requires prompt assessment by ahealth care professional. As digital ulcers are common inscleroderma, further research is needed into new ways oflooking at ulcers and also new types of treatments.

Dr Michael HughesSpecialist Registrar in RheumatologySalford Royal NHS Trust

Digital Ulcers - what are they and what can be done?

At the University of Glamorgan, we are currently undertakingresearch with the aim of developing smart clothing which willretain heat for longer. As part of this project, we will beperforming a study to help us better understand the vascularshutdown associated with Raynaud’s and scleroderma andhow to improve objective assessment of its severity, followinga mild temperature change. We are approaching members ofthe RSA to ask you to consider being a volunteer in this study.We would like to assure you at this point that you are not underany obligation to volunteer, and even if you do, you would befree to withdraw at any time. Participants will be recruited untilFebruary 2013, with testing starting in March 2013. The studywill require you to visit us at the address below, from March 1stonwards, and then you would be expected to be able to return

for a repeat testing 6 months, and 1 year later (September2013 and March 2014).The research will take place at the infrared thermographylaboratory, at the Clinical Technologies Diagnostic ResearchUnit (CT-DRU), Innovation House, University of Glamorgan,CF37 1DL South Wales. We intend to cover reasonable travelcosts for volunteers, and would therefore would be looking forrecruits within easy travel of Pontypridd in the South Walesvalleys to include Cardiff.If you are interested in taking part in the study and/orwould like more information, please register your interesteither via email at [email protected] or call 01443483555.Prof Peter McCarthy and Danny Clegg

Invitation to Participate in a Research Study

Dr Michael Hughes

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A key point is that if you are concerned about adigital ulcer for any reason, including if it might be

infected then you should get it checked out by amedical professional.


09

Medical News

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Scleroderma Renal Crisis (SRC) is an uncommon but seriouscomplication of a rare disease. Fortunately a good deal hasalready been learned about SRC and the well defined natureof this complication is permitting us to research into thepossible causes and potential treatments.

The diagnosis of SRC is made in the context of a patient withknown scleroderma, with some characteristic clinical findingsincluding:

• New onset hypertension (150/85) on more than onereading

• A decline in renal function• Evidence of red blood cell destruction in the small vessels*• Retinal changes of severe hypertension (see figure 1)• New onset of blood in urine (without other causes)• Pulmonary oedema (rapid onset of fluid on the lung)• Renal biopsy demonstrating the classical findings

of SRC #Not all of these features need to be present for the diagnosisand SRC occurs as the presenting feature in 20% of patientsnot previously known to have scleroderma.

Any patient with severely high blood pressure can developthese changes but in general SRC is more likely to affect thosewith rapidly progressive and severe scleroderma. Overall,about 12% of patients with scleroderma develop SRC but thisnumber shrinks to only 2% in those with limited scleroderma.If a patient has not developed SRC in the first 4 years of theirdisease then they are very unlikely to get it subsequently.Other predictors include the use of oral steroids, non-steroidalanti-inflammatory drugs, cocaine and other drugs such ascyclosporine. Research done at the Royal Free hasdemonstrated an auto-antibody, Anti-RNA polymerase, whichif present in a patient’s blood is an important risk factor fordeveloping SRC although the mechanism is not yetunderstood. Conversely the absence of Anti-RNA polymeraseis very reassuring and significantly reduces the risk of a patientdeveloping SRC.

It is possible to infer the diagnosis without needing a renalbiopsy but it is quite common to find a kidney disease otherthan SRC on biopsy which requires different treatment, so it isour practice to recommend a renal biopsy on all patients withSRC if clinically appropriate.

The precise initiating factor for SRC is not clear but arterialblood vessels in the kidney seem to spasm (a bit like the handvessels in scleroderma). This results in higher blood pressureand the cells in the walls of the renal blood vessels thicken thearteries resulting in a much smaller and abnormal vesselcentre# (see figure 2). The blood supply to the kidney viathese vessels is much reduced, exacerbating the wholeprocess. In addition the abnormal vessels cause red bloodcells and platelets to get damaged or destroyed as they passthrough producing characteristic findings* in the laboratory. Ifnot controlled the process tends to act as a vicious cycle asthe kidney functions less well and is unable to get rid of saltand water resulting in worse blood pressure and fluid in thelungs.

Without effective treatment it is not difficult to imagine whythis complication of scleroderma used to have such a poorprognosis with <20% one year survival. Fortunately, howeverthe introduction of better monitoring and a group of drugsknow as Angiotensin converting enzyme inhibitors (ACEi),has transformed the outcome for patients with SRC andrecurrence of SRC seems very rare while patients continue totake these drugs.

When patients with scleroderma do develop hypertension it isimportant for them to be monitored closely and, if severe theyshould be admitted. Short acting anti-hypertensive drugs areused and gently increased on a daily basis, often withintravenous prostacyclin aiming for a gentle, (not sudden)reduction in blood pressure.

It is not uncommon for patients with SRC to have acute renalfailure and require either haemofiltration on ITU or dialysis ona renal ward and subsequently for patients to remain dialysisdependent. Having said that SRC is unusual among renaldiseases in that a significant proportion of patients canrecover enough renal function to not need dialysis even aftera year of treatment.

Finally, for those patients left requiring dialysis or with poorkidney function, transplantation remains a viable option withoutcomes similar to non-scleroderma patients.

Dr Mark Harber Renal Consultant Royal Free London, NHS Foundation Trust

Scleroderma Renal Crisis (SRC)

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Figure 1. Hypertensive retinopathy: this picture shows retinalhaemorrhages and exudates in a patient with severe

hypertension and SRC.

Figure 2: A renal biopsy of a patient with SRC demonstratingnarrowing of the blood vessels down to a pin-hole.

Current vessel lumen

Original vessel lumen


10

Connective Tissue

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CoConnective Tissue Disease and Overlap Syndromes

Half a century ago, the name‘connective tissue diseases’ wascoined to cover a group of conditionsdistinct from each other, but with anumber of features in common. Theyinclude lupus, myositis, Sjögren’sSyndrome, scleroderma, mixedconnective tissue disease andvasculitis. In 1983, another relatedcondition, the anti-phospholipidsyndrome (Hughes syndrome) wasadded.

The features in common are:

1. Women are affected more frequentlythan men

2. The diseases are capable ofaffecting many organs

3. They ‘overlap’ with one another,both in clinical features as well as inlaboratory abnormalities

4. There are important abnormalities ofthe immune system

5. Blood vessels are commonlyaffected

Lupus

This disease is recognised throughoutthe world and predominantly affectswomen (female : male 9:1) between theages of 15-50.

Any organ can be affected, butespecially common are skin rashes,hair loss, pleurisy and joint pains. Thedisease can also lead to more seriouscomplications, including kidney, brainor cardiac involvement.

Lupus differs from rheumatoid arthritis(RA) in a number of ways. Unlike RA, itrarely causes joint damage, forexample.

Although the causes of lupus areunknown, both genetic, hormonal andenvironmental, (for example sunlight)factors are known to play a part. Centralto the disease process is an overactivityof the immune system, leading to anoverproduction of antibodies, notablyanti-DNA antibodies, important in bothdiagnosis and disease management.

Medical treatment includes hydro -xychloroquine (Plaquenil), widely usedas maintenance therapy, steroids formore acute or severe cases, andimmuno suppressives such asazathioprine, methotrexate andmycophenolate mofetil.

Sjögren’s Syndrome

This syndrome, originally described asa triad of dry eyes, dry mouth andaches and pains, is now regarded as a‘cousin’ of lupus. Again, the centraldefect is an overactive immune system,leading to over production of anti -bodies and widespread clinical featuresincluding rashes, enlarged glands,cystitis, joint and muscle pain, andfatigue.

Sjögren’s differs from lupus in beingmore common in an older age group(40’s to 60’s) and less likely to result inkidney or other major organ damage.Nevertheless, it can cause considerabledisability, with fatigue and muscleaches being marked, many patientsbeing wrongly diagnosed as havingfibromyalgia.

The dry eyes and mouth are a result of infiltration of the lachrymal and salivary glands by lymphocytes andinflammatory cells, leading to impairedsecretion of tears and saliva, and to anincreased risk of corneal damage andof dental and oral problems.

A very rare complication of Sjögren’sSyndrome is lymphoma, usuallypresenting with chronic, markedswelling of the lymph glands.

As with mild lupus, the ‘maintenance’treatment for Sjögren’s is hydro -xychloroquine (Plaquenil).

Hughes Syndrome AntiphospholipidSyndrome (Aps)

This is a condition in which abnormalclotting (in arteries as well as in veins)can lead to a wide variety of clinicalfeatures. The clotting abnormality issecondary to a group of antibodiesknown as antiphospholipid antibodies.

Clinical features include clots in arms orlegs, or in internal organs such as theliver, kidney and heart.

Two organs especially vulnerable arethe placenta and the brain. Clotting inthe placenta in the pregnant womanleads to oxygen starvation in the foetusand a risk of abortion. Hughessyndrome is now known to be the commonest, treatable cause of recurrent pregnancy loss. Thesymptoms of brain involvement includestroke, balance difficulties, and multiplesclerosis-like features.

Treatment is with anti-clotting drugs,including aspirin, heparin or warfarin,depending on the severity.

There are overlaps between Sjögren’s,lupus and Hughes syndrome. Some 20-30% of lupus patients are positive forantiphospholipid antibodies and carrythe same risk of thrombosis andmiscarriage as patients with Hughessyndrome.

Scleroderma

In this rare syndrome, there is aprogressive stiffening and thickening ofthe skin, affecting the fingers, hands,forearms and face. More widespreadthickening can affect the thighs, chestand abdomen. The process is due to anoverproduction of collagen (scar-liketissue).

Prof Graham Hughes

Particularly common are memoryproblems (many patients fearing

Alzheimer’s disease) and headacheand migraine – it has been

suggested that Hughes syndromeis a potentially treatable link

between migraine and stroke.

More recently so-called biologicagents such as rituximab

(Mabthera) and belimumab(Benlysta) have proved an

important advance in treatment.


11

Connective Tissue

In more severe cases, internal organscan become scarred and immobile,including the oesophagus (difficulty inswallowing, heartburn), tendons, gut(diarrhoea and malabsorbtion) and thelungs, leading to shortness of breathand, in extreme cases, pressure on theheart. Raynaud’s phenomenon (fingersand toes frequently turning white) iscommon.

Mixed Connective Tissue Disease

First described in the 1960’s by DrGordon Sharpe (in the United States)this condition, as the name implies, caninclude ‘mixed’ features of lupus,scleroderma and myositis.

It is very distinctive, and immuno -logically marked by a single antibody –antiRNP. The clinical features arearthritis, especially in the hands, withcharacteristic ‘sausage fingers’, markedRaynaud’s (much more severe than inlupus), slight skin thickening (butdistinct from scleroderma), frequentmuscle pain (and sometimes prominentmuscle weakness), and pleurisy andpericarditis.

Unlike lupus, kidney involvement is theexception. The disease often takes a‘grumbling’ course and treatment isgeared to the severity of symptoms.

Myositis

Myositis ‘polymositis’ if muscles aloneare affected or ‘dermatomyositis’ if thecharacteristic skin rash (violaceous rashon the face, eyelids and knuckles) ispresent – is characterised by weaknessrather than muscle pain.

The ‘proximal’ muscles, upper arms,thighs, neck muscles, are mostprominently affected. A commonpresentation is with difficulty in risingfrom a sitting or crouching position. Inmore severe cases, there is difficulty indressing, or even, in extreme myositis,in breathing, due to weakness of thediaphragm and chest wall muscles.

The condition is caused by an infiltrationof the muscles by inflammatory cells,leading, if untreated, to muscle fibredamage and scarring.

Treatment in the acute stage is withcorticosteroids plus or minus

immunosuppressive drugs such asmethotrexate.

Vasculitis

This term is given to a rather widevariety of conditions in which theprimary pathology is inflammation of the blood vessels. There are almostcertainly a number of different causes,including viral infection and allergy, and

the vessels involved range from small(capillaries) to medium/large arteries(eg polyarteritis nodosa). One clinicallysomewhat distinct vasculitic condition isWegener's granulomatosis, in whichinflammation in arteries and veins iscompounded by so-called granulomaformation in the sinuses and lungs.

Fortunately, this life-threateningcondition usually responds to theimmuno suppressive drug cyclo -phosphomide.

Our thanks to Prof Graham Hughes,Consultant Rheumatologist, TheLondon Lupus Centre, London BridgeHospital and to LUPUS UK for givingpermission to reproduce this articlewhich appeared in LUPUS News &Views, Summer 2012

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Tests include an increased bloodlevel of the muscle enzyme creatinekinase (CK), and abnormal muscle

electrical activity (see in anelectromyogram or EMG).

LOCAL CONTACTSBurton on Trent, Helen Nutland

01283 566333 Ext. 5032

Bristol & Bath, Margaret Goff 01454 310225


South Cumbria/ Ruth RandallNorth Lancs 01524 903493


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 416553

North Wales, Kate Owen01492 515834

Portsmouth and Hampshire,Alison Wright02392 367960 & 07986 900262

Rickmansworth, Marilyn York01923 286780

Shipley, W Yorks, Bev Myers 07903 448038

Suffolk & North Essex, Jacky March01394 286637

Surrey, Fay Collings01737 762005

Worcestershire, Shirley Lynch 01386 553392

If you would like to become a contactfor your area please get in touch on 01270 872776 or [email protected]

Flu JabsHave you remembered to have yourflu jab this year? They are stillavailable in November so if you havescleroderma or other auto immunedisease and are eligible for any otherreason, do contact your health centreand get an appointment.

Calling HealthProfessionals

Contributions from healthprofessionals for future issues ofHot News are always welcome.


12

Fundraising

In July, the ladies of Purleigh (Essex)Quilters and the Stitch and Craft Groupheld an Exhibition of their work.The Quilters group made, then raffled, abeautiful Dresden Plate design quilt.This raised a total of £451.00. Thephotograph shows Carol Smith, leaderof the quilters presenting the cheque tofellow-member, Gill Hagyard, also amember of the RSA.The proceeds of the Exhibition weredivided between the two groups andPauline Potter, leader of Stitch and Craftdonated £150.00 of their profits to theRSA.A grand total of £601 was thus raisedfor the RSA.

Colourthon

In the photograph are Amanda Layenand her sister-in-law. Mandy has bothRaynaud’s and scleroderma so tocomplete the moonlight colourthon(13.1 miles) in 3 hours 49 minutes wasa huge achievement. Thank you somuch for your efforts on our behalfMandy. It just goes to show whatdetermination can do. £312 was raised.

Lands End to John O’Groats

Nick (far right) with friends whocompleted the cycle ride over 12 dayscycling from Lands End to JohnO’Groats. Unfortunately Nick pulled hishamstring and was unable to completethe course but everyone who hadsponsored him wanted the money to beput towards our Cool Million, in memoryof Nick’s Mum, Christine Jewer. RBCWealth Management, kindly donated£200 towards Nick’s event. Total £1345

Only Gold & Silver!

Quilting andEmbroidery Exhibition

Great North 10K Run

We have recently heard from BarbaraBuchan who has to date raised over£16,665 by selling unwanted jewelleryitems sent to her by members andwhich she has sold at various Fayres.Barbara has asked us to say that shecan now only sell scrap gold and silver,so please do not send any other itemsas Barbara is no longer in a position tosell them once her current stock hasbeen sold.If you would like an acknowledgement,please enclose your phone number sothat Barbara can call you to say thepackage has arrived.Barbara Buchan, 6 Meadowlands,Woolpit, Bury St Edmunds, Suffolk IP309SE

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Birthday GiftMyrtle Mayne kindlysent the RSA £350 inlieu of gifts for her70th Birthday. We aremost appreciative forgifts of this kind.Thank you Myrtle.

Sincere thanks to Cheryl and Pete Scullywho took part in the Great North 10K Runand raised a totral of £812.50. A bonuswas a donation by Brian Scully’semployers AMEC who made a donationof £600 which was presented to Anne atthe Conference by Brian Scully.

Marg Bacon who raised £530 in lieuof gifts for her 70th Birthday

Jean Walton organised a MemorialFootball Match In Memory of her sonRobert raising £150

Heather Lee continued her supportwith a Bingo Event, sending us acheque for £250

Thanks for the £200 raised by theSolent Wives who held Bring & Buysales.

Wendy Liddle has once againopened her garden as part of theNational Garden Scheme for whichwe benefitted by £164

Ben Rigden completed a triathlon atRigmere raising £170 for the RSA ashis Grandma Betty Harringon suffersfrom this conditon.

John and Shirley Lynch together withgroup members from Worcestershire,have once again given out publicityitems and raised awareness of theRSA at the Pershore Plum Fairraising £333.60.

A very successful Hog Roast wasorganised by Nikki Hunt’s parents,which raised a total of £3,665. Thisincludes a generous donation fromChristopher Ruse at the DeutscheBank.

Nikki’s local pub, the Black Bull sent£34.87 from their customers’collecting box and Nikki’s employers,Fix Protocol, had a loose changecollection raising £182.61.

Thank you Nikki for encouraging yourfriends, family and colleagues toraise funds for the RSA. We are mostappreciative.

Sincere thanks to allthe following:

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13

Fundraising

RSA Trading Company Limited

We now have a Trading Company forpayment of our stock items with aseparate bank account. Whenordering stock please make chequespayable to RSA Trading Co. Ltd.Cheques for donations, fundraising,memberships etc, need to be madepayable to RSA.

Please NoteDonations and activities on these pagesare up to the end of September. Theresimply isn’t enough room to publish allevents in this issue but we are mostappreciative and all donors have beenthanked personally. If you send or havesent a photo with your cheque, we willtry to include it in the next issue of HotNews.

Medway Mile

Our thanks to Ray, Joan, Brenda andLeslie, son Steven and grandson Ethan,pictured above, who took part in theMedway Mile raising £340 plus Gift Aid,for the RSA. Very many thanks to all.

Great North Swim

Myself and two work colleagueswanted to go one better than justcompleting the Great North Swimwhich I had completed two years ago,for the Raynaud's & SclerodermaAssociation, so we decided that wewould complete all five of the BritishGas one mile open water swims for ourchosen charity. The challenge we setout to achieve at the start of the yeargained extra meaning and was evenmore personal when my Mum passedaway in February.

At this stage my wife and good friendjoined in the challenge to raise evenmore funds. Our first event wentsmoothly in London on a glorioussunny day in May at the Victoria Docksnear the Millennium Dome. Howeverthe other four swims proved morechallenging as three were cancelleddue to poor weather conditions or poorwater quality.

We managed to complete the GreatManchester swim at Salford Quays butthe Great East Swim in Ipswich and theGreat North Swim in Windermere werecancelled due to high winds. Each timean event was cancelled we made ourway to the Lavender Patch pool inHilton, Derbyshire to complete ourcommitments of a one mile open waterswim. Unfortunately our last swim wascancelled at Strathclyde Country Parkdue to poor water quality levels soagain we returned to the LavenderPatch pool to get the job done.

We all enjoyed the challenge and thetraining along the way and felt it was afitting tribute in memory of my lovelyMum who suffered without complaintwith this debilitating condition for solong.

To date I have raised £2,935.

Danny Reddings

Well done and thank you, Danny!

Manchester 5K Run

Kelvin Turner, Becky Arber and MikeThrussell. Becky raised £515 by runningas a crayon, in the Big Fun Run -Manchester 5K. Becky kindly raised thismoney in memory of her Aunt, JeanBlakeley.

The Ship Inn

From left to right Billy, Heather, Lorraineand Jimmy. Heather Smith and friendLorraine have been continuing with theirsupport for the RSA by raising a hugeamount of £3,567 at the Ship Inn inFraserburgh through a Charity HorseRace at which, landlord, Mark Forsythkindly provided the food. This moneywas raised in memory of Lorraine’sdaughter Amanda Jamieson.

Nationwide BuildingSociety

Hannah Old, Anne Mawdsley, CherylOliver (Manager), and Karen Littley,receive a cheque for £500 from theAlsager Branch of the NationwideBuilding Society (Cheshire BuildingSociety). This money was raised bycustomers putting coupons into a boxfor their charity of choice.

Wedding Donation

Susie and Robbie Palmer kindlydonated £496.25 from their wedding.

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14

Adverts

Twin pack of 10 cards 5 of each design as illustrated

Size 137mm x 137mmPrice £3.50 (plus 75p p&p per pack)

Please make cheques payable to RSA Trading Co. Ltd

Wording inside all cards

‘Warmest wishes for Christmas and the New Year’

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Fo

SChristmas Cardswhile stocks last!


15

AdvertsGreen 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&pFor further details or to place an order

visit: www.turtle-doves.com or call 01743 344702.

Anne’s Tip - These fingerless mittens arereally comfortable and have an addedbonus. Instead of taking them off, leave onall day by using as wrist warmers and byslipping out the thumb, you can then put athicker pair of gloves or mittens over thetop.

Publication costs for this issue of Hot News are supported by GSKGSK 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 notnecessarily reflect the opinions of GSK.

Steering Wheel Grip

I have just changed my motability carand it came with a new steering wheelgrip. I therefore have a spare one ifanyone would like it call the office on01270 872776.

Anne

A very enjoyable meeting was held inCardiff on 8th October at whichRheumatology Consultant, Dr TomLawson talked about the servicesavailable to Raynaud’s andscleroderma patients in Wales. He thenanswered questions from members inwhat proved to be a most interestingand informative session for allconcerned.

Regional MeetingCardiff Very many thanks to everyone who

sold raffle tickets for the Cool MillionPrize Draw. We are still awaiting a finalfigure which will be announced in thenext issue of Hot News.

Cool Million Draw

Dr Tom Lawson


Did You Know?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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Discounted Royal Mail Stamps

If you receive Pension Credit,Employment and Support Allowance,Incapacity Benefit or UnemployabilitySupplement, you can buy up to 36stamps in either books of 6 or 12 atRoyal Mail Christmas 2011 prices. Theoffer is available from 6 November untilChristmas Eve (24 December)

Stamps can be purchased from anyPost Office. Vouchers were delivered toevery residence between 8 and 18October

If you need to speak to someone aboutthe offer, you can contact Royal MailCustomer Services on 08456 016 248.

A Guide for Disabled People

Look out for RADAR’s latest publication"If only I'd known that a year ago..."which includes information for disabledpeople, their families and friends'. Itprovides an introduction to relevantservices, rights and facilities. It is adefinitive guide of discounts fordisabled people as well as informationabout incentives and benefits. Coveringareas such as accommodation, aidsand equipment, education andemployment, discrimination, health andsocial services, transport, sport andleisure, benefits and personalrelationships, it gives all the informationneeded to 'start the ball rolling' and thesignposts to gain more detailedknowledge as required.

National Key Scheme

Also, invaluable, the National KeyScheme for accessible toilets.Accessible toilets are the ones that havebeen built or adapted so that disabledpeople can get access into them and touse them.

The keys also fit a lot of these new self-cleaning street toilets. The cost of a keycan pay for itself within a short time.

National Trust Policy

National Trust (England) has anadmission policy for disabled people

which admits the "necessarycompanion" or personal assistant of adisabled visitor free of charge, onrequest, while the normal membership,or admission fee, applies to the disabledvisitor. To save having to ‘request’ acompanion's free entry each time yougo, you can apply for an 'Admit One'card to be issued. There's no charge forthe card, it is in your name but it takesquite a long time to arrive so book early!

Disabled Person’s Railcard

I have a Blue Badge parking permit -does this make me eligible for aDisabled Persons Railcard?

No. Being a Blue Badge holder doesnot, in itself, entitle a person to qualifyfor a Disabled Persons Railcard. TheBlue Badge scheme is designed to giveparking privileges to people withmobility problems who have difficultyusing public transport. It is run by localauthorities who have the flexibility to usetheir discretion when issuing badges.So whilst many of the people who haveBlue Badges may be candidates for aRailcard, there are many who would not(for example, people with short termillnesses and conditions or parents ofchildren who need to transport bulkymedical equipment). Therefore wecannot accept the Blue Badge alone asgrounds to issue a Railcard.

I have a local authority concessionarybus pass - does this make me eligible fora Disabled Persons Railcard?

No. Holding a concessionary bus passdoes not, in itself, entitle a person toqualify for a Disabled Persons Railcard.Concessionary bus passes areadministered by local authorities whohave the flexibility to use their discretionwhen issuing passes. So whilst many ofthe people who have a bus pass may becandidates for a Railcard, there aremany who would not (for example,people with short term illnesses andconditions). Therefore we cannot acceptthe bus pass alone as grounds to issuea Railcard.

Can I get a discount on my Oyster cardif I have a Disabled Railcard?

Disabled Persons Railcard discount isavailable on Oyster pay as you go inLondon. Disabled Persons Railcardholders can register their Railcarddiscount onto their Oyster card to getthe following discounts:

1/3 off Oyster Off-Peak pay as you gosingle fares on National Rail, LondonUnderground and Docklands LightRailway services.

1/3 off Oyster Off-Peak Daily price capon National Rail, London Undergroundand Docklands Light Railway services

Railcard discounts can be registered onan Oyster card at any LondonUnderground ticket office or at aNational Rail ticket office that issuesOyster cards. These discounts are forthe Disabled Persons Railcard holderonly.

Access to Work

An Access to Work grant is money forpractical support to help you do yourjob. It’s for people with a disability,health or mental health condition.

The money you get can pay for thingslike specialist equipment, travel whenyou can’t use public transport or acommunicator at a job interview.

How much you get depends on yourcircumstances. It is only available inEngland, Scotland and Wales. Anymoney you get doesn’t have to be paidback and won’t affect your otherbenefits.

Comments and Contributions

We welcome input from our membersand supporters. These could be tipswhich you have found to be helpful,news of events taking place,comments on Hot News etc. in factanything which you feel would be ofinterest or help to other members. Wevery much appreciate photographstaken at events so do remember yourcamera!


raynauds hot news vol4

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