Raynauds Newsletter - Hot News Issue 114

hot news Issue No. 114

Volume 4 2010

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

Conference pages 4 - 8

In support of the 'Cool Million' Appeal Fiona Bruce said: "This is a remarkable campaign led by a remarkable organisation. I encourage everyone to give generously to the Raynaud's & Scleroderma Association, who fund research in the UK and provide invaluable support for those experiencing these conditions."

Photograph courtesy of Jeremy Condliffe, Congleton Chronicle Series

RSA Research Grants

The Gut in Scleroderma

The total commitment to research at this present time is £959,085.00 which includes the following grants awarded in 2010: Addenbrooke’s Hospital - Assessment of Hand Ischaemia Outcome Measures in patients with Systemic Sclerosis - 6 month project - Dr Frances C. Hall Salford Royal Hospital (Hope Hospital) - 50% Funding of a Nurse Specialist (Liz Wragg) 2 year funding - Dr Ariane Herrick King’s College London - Does endoglin modulate the angiogenic switch of TGFbeta signalling in systemic sclerosis? - 1 year project - Dr Sarah Howat Newcastle Upon Tyne University - Functional analysis of Tumor Necrosis Factor-alpha Receptor 1 and 2 in mononuclear cells in Systemic Sclerosis - 2 year project - Professor van Laar/Thomas Heugle The RSA is also currently funding research and welfare projects at the following centres: RNHRD, Bath Brompton Hospital, London Royal Free Hospital, London Salford Royal Hospital (Hope Hospital) A full list of active and completed grants can be viewed on our website

Our gastrointestinal tracts or ‘guts’ are essential to all of us in our day-to-day lives, but this part of the body is often taken for granted or over-looked. We rely on normal gut function to obtain nutrients which provide ‘fuel’ for healthy organ function, to obtain water which is essential for life, and to eliminate waste products. In addition, eating is an important social activity and should be a source of daily pleasure to all of us.

80-90% of people with scleroderma have gut problems, and all of the gastrointestinal tract can become involved in scleroderma - from top to tail.

The principal problems with the gut in scleroderma 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 wall Muscles in the gut wall wasting Thickening of the gut wall with fibrosis/collagen  Blood vessel abnormalities in the gut: Telangiectasias: dilatation of the smallest blood vessels Raynaud’s phenomenon: poor blood flow due to blood vessel spasm.

www.raynauds.org.uk

Professors Jaap van Laar and Jeremy Pearson, Dr John Pauling and Dr Frances Hall.

Brian Medley and his daughters Suzan and Karina, present a cheque for £1,000 to Anne Mawdsley at the conference, in memory of Brian’s wife Sylvia.

Cardiff Meeting

Continued on page 5

Renewal Time!

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

Rheumatologist Dr Tom Lawson, who spoke at our regional meeting in Cardiff on the 15th September. This meeting was well supported and members gained a great deal of information from Dr Lawson during question time, not only on their condition but also about referrals.

PLEASE SUPPORT THE ‘COOL MILLION’

Welcome Dear Readers, 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 Anne H Mawdsley MBE

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

Cool Million Since the ‘Cool Million’ was launched we have to date received over £115,000 in donations. My sincere thanks to everyone who has helped in this way. There is still a long way to go to reach a million by 2012 but if we all work together I am confident that we will reach our target.

Remember that it isn’t only raising money which is important but also creating awareness. We have posters and leaflets which we can send to anyone who can help to promote the work of the RSA

How will the money be spent?

You will have seen quotes from Professor Dame Carol Black and Professor Chris Denton in the Cool Million leaflet and in the last issue of Hot News, suggesting which areas of research are most in need of investigating further.

We really do want to hear from you, our members, as to which areas you would like to see prioritised for this funding. One of our greatest aims is to improve the quality of life for those who have these conditions.

Help with Postage One of the RSA's largest expenditure is postage. It is easy to forget that a 1st class stamp costs 41p and a second class is 32p.

Every month we are inevitably paying out hundreds of pounds for postage stamps but if members could send an SAE or a stamp if their letter requires a reply, it would really help to save us money.

Alternatively, contact by email is the cheapest way to correspond and we are happy to reply to members by email providing you give us your email address.

CHIEF EXECUTIVE & FOUNDER Anne H Mawdsley MBE PRESIDENT Prof. Dame Carol Black DBE TRUSTEES Barry Hicks, Joanna Kaddish Kevin Lafferty, Jeremy Pearson

Membership Renewal

by putting up posters, displaying leaflets or better still, by giving a case study which can If your membership is due for renewal, be used for the media. please complete the form which is on the reverse of the carrier sheet which has your Annual Conference address on. This year we would be grateful if Thank you to everyone who sent us members could inform us if they require a feedback on this year’s conference. receipt for their renewal and/or donation. If Without exception we were told it was the we were to acknowledge every single best yet with over 100 people attending. It cheque it would cost us hundreds of was good to meet new members and pounds. Maybe this year you could set up a renew acquaintances. All the speakers Bankers Order ensuring that your were excellent and many delegates left the membership will continue to run or weekend with food for thought, knowing alternatively take out a multi year that with such a devoted group of membership? We do value your support and consultants in the UK, things can only get are here to help in whatever way we can. better in the future.

Gift Aid it!

Regional Meetings

When making a donation if you are a taxpayer please help us by signing a Gift Aid declaration. It really does mount up. For example a donation of £25 is worth £32 if Gift Aided. This is particularly relevant when people make donations in lieu of flowers in memory of loved ones which often results in hundreds of pounds. We are most appreciative for all donations and can supply Gift Aid forms should you need them.

Meetings were recently held in Cardiff thanks to Dr Tom Lawson and in Bath where Sister Sue Brown organised a meeting at the RNHRD. We will be organising further regional meetings next year. Professor van Laar has offered to hold a meeting at the James Cook Hospital in Middlesbrough and there will be other local venues, so do watch Hot News for details.

Percy’s Travels

We would like to reintroduce the Percy travel theme, where people take photos of Percy at This year’s annual draw has raised over different venues across the UK and on £10,000 and as this newsletter went to print holiday around the world. Please do send us the money was still coming in. Winners will any photos, especially unusual ones! be notified and a list will be in the next issue of Hot News. In the meantime if anyone New Team Member would like to receive a list of winners please On 1st September we welcomed Hannah Thomason, who joined the team as a send an SAE with your request.

Worker, at Head Office. She is Raynaud’s Awareness Month Support being funded by the Government Access to Please help to create local awareness in Work Scheme. your area during this month. Do let us know if you would be prepared to help in any way

Annual Draw

With warmest wishes

PATRONS Sharron Davies MBE Roger Jefcoate CBE Veronica, Lady Piercy Nick Ross David Wilkie MBE

Anne

MEDICAL ADVISORS Prof. J Belch; Sister S Brown Prof. C Denton; Dr. A L Herrick Dr. C Lovell; Dr. R MacDonald Prof. P Maddison; Prof. R Moots Prof. D Scott; Prof. A Silman Dr. D Veale

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 Charity Reg. No. 326306 DISCLAIMER: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products.

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

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Doc Spot Your Questions Answered Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free Hospital

I would be grateful if you would tell me if there is any connection between Raynaud’s and carpal tunnel syndrome? I have always suffered from white fingers and I know my mother did too. It is not too bad except in very cold weather. Last year I was told I had severe carpal tunnel but it has recently got worse and is very painful. I am waiting for an appointment but I wondered if there was a connection and if there is anything I could do to ease the pain.

There is no direct relationship but inflammation around the joints and tendons in connective tissue disease can lead to pressure on the median nerve at the wrist which causes carpal tunnel syndrome. Many connective tissue diseases are associated with Raynaud’s so there is an indirect link. In addition Raynaud’s phenomenon may aggravate the symptoms of carpal tunnel syndrome even though it does not cause the problem.

I have limited scleroderma and have recently been aware of what I realise is calcinosis in my fingers. What intrigues me is that some of the little hard nodules are like pieces of bone when they break through the surface whereas at other times it is more like a creamy substance, often surrounded by red inflammation and of course are very painful.

What is the difference between the hard calcium and the soft version?

Calcinosis describes the formation of calcified material under the skin. It occurs in a number of medical conditions including scleroderma and is common in the limited subset of the disease (it gives the “C” to CREST syndrome, an old fashioned medical name for limited scleroderma). Calcinosis probably occurs due to abnormal healing of damaged or inflamed tissue and especially occurs at sites of minor trauma or pressure on the skin. Laboratory analysis confirms that the calcium in calcinosis is in the same form as found in bones. However sometimes it starts as a softer liquid form that hardens into lumps. This probably reflects chemical modification analogous to the hardening of bones as they form or repair.

I have Raynaud's and one consequence of this is that I get chilbains very badly. I have chilblains at the moment. I take ginkgo biloba which helps. I have just read an article on pycnogel which says that it regulates the production of nitric oxide, which is involved in blood vessel dilation.

Does this mean it would benefit Raynaud's sufferers by improving blood flow to the fingers and toes?

Several of the treatments that are used in Raynaud’s phenomenon work by increasing the activity of nitric oxide or its signalling pathways. This includes GTN ointments and agents such as sildenafil. It should be noted that these drugs are not licensed for Raynaud’s but there are clinical trials ongoing that may, if positive, lead to more treatment options that work in this way.

My wife suffers from angiosarcoma on her scalp and we wondered if there was any connection with her Raynaud's as both are concerned with small blood vessels in the skin.

I am not aware of any direct connection between these two medical conditions, but interestingly there are some reports in the medical literature of angiosarcoma of the liver associating with Raynaud’s phenomenon in patients exposed to the chemical vinyl chloride. The fact that both conditions involve small blood vessels is probably just coincidence.

I have been told by my GP that in future, they will not be supplying enteric coated prednisolone. Will this cause a problem with my stomach?

In theory there is no difference between the effect of enteric coated (EC) or non-EC prednisolone. Some specialists believe that non-EC is superior because the absorption from the gut is more consistent. However, the EC preparation may be associated with less indigestion. Most patients taking prednisolone will also be prescribed a medication to prevent indigestion. Therefore, generally it would not be expected that non-EC would cause a problem but if it does you should discuss with your doctor and ask whether you could be prescribed the EC preparation.

My daughter and I have recently been on a walking holiday during which the weather was cold and miserable. A strange thing happened on our return to base on the last day. My daughter who is 42 said her hands were numb and tingling and they had changed colour. She went to the doctor who suggested that Raynaud's could be the problem. Can Raynaud's come on suddenly like that?

Raynaud’s phenomenon occurs when the blood vessels supplying your extremities narrow in response to cold or emotional stress. It leads to colour changes with blanching (white) of the fingers and later blue discolouration and after an attack the fingers can become red. Loss of sensation or altered sensation occurs as the nerves in the hands have insufficient blood supply.

These changes reverse when the attack passes. The most common age to develop these symptoms is as a teenage or young adult. However, it can occur at any age.

Sometimes there have been mild symptoms for several years and only when you get especially cold or have exercised in cold conditions does the Raynaud’s become obvious. If these attacks persist or if there are any other symptoms then your daughter should see her doctor as Raynaud’s can be the first symptom of an underlying condition such as a connective tissue disease.

I have scleroderma and have also been told that I have coeliac disease. Having read articles in Hot News I wonder if in fact my bowel problems are linked to scleroderma or can you have coeliac disease as well as scleroderma?

Scleroderma is one of the diseases in which overactivity of the immune system occurs and this is reflected in blood tests that demonstrate antibodies that can bind to your own tissues. Other similar diseases can occur in patients with an overactive immune system, so-called autoimmune diseases. One of these is coeliac disease that results from immune damage to the lining cells of the small bowel and an ‘allergy’ to wheat and other gluten containing foods. Coeliac disease causes diarrhoea, weight loss and bloating of the abdomen. However, similar symptoms can occur due to scleroderma and so tests should be performed to determine the cause of the problem. If coelic disease is confirmed (usually a blood test and an endoscopy are needed to make the diagnosis), then symptoms may improve a lot by following a gluten-free diet.

If you have a question you would like Professor Chris Denton to answer, please send to Head Office 03

Conference Annual Conference 2010 Report It was wonderful to see so many delegates at our 28th Annual Conference at the Ramada Hotel in Chester. Some people had attended in previous years whereas others came for the first time. Many members arrived early on the Friday afternoon so that they could have time to explore the historical city of Chester.

Others relaxed in the hotel making the most of the excellent facilities including a warm swimming pool.

The evening meal was an opportune time for members to catch up with old friends and make new acquaintances. After dinner Fiona Trotter said a few words about the important role which fundraising and the media plays in helping to raise awareness about Raynaud’s and scleroderma. Jo Kaddish, Emma Major, Kathy Allen and Brenda Argent talked about their experiences of highlighting the conditions.

Trustee, Professor Jeremy Pearson welcomed delegates and then handed over to trustee Jo Kaddish who chaired the morning session. The first speaker of the morning, Dr Frances Hall, from Addenbrooke’s Hospital in Cambridge, set the scene for the day by giving a very informative talk entitled, ‘Raynaud’s and Related Research’, which highlighted the symptoms and treatments for both Primary and Secondary Raynaud’s and outlined some of the current research.

Jeremy Pearson, gave a fascinating presentation entitled, ‘The Endothelium in Scleroderma’ in which he focused on the importance of cells that line all blood vessels. Professor Jaap van Laar from Newcastle University gave a most interesting account of the Autologous Stem Cell Transplantation International Scleroderma Trial. Dr John Pauling, who has taken time out of his specialist training in rheumatology to undertake a period of research into scleroderma spectrum disease at the Royal National Hospital for Rheumatic Diseases in Bath, presented the preliminary findings of the RSA Dando Fellowship. His research is jointly funded by the RSA and the Royal College of Physicians Dando Fellowship.

Mr Andrew Clarke, Consultant Surgeon at

Ann House and Ron Bushby

04

Poole Hospital in Dorset gave a very graphic presentation called ‘Cold hands need a warm heart...and a working bottom!’ His presentation was illustrated by video clips of operating techniques used to alleviate the problem - accepted by the audience with great humour and this was before lunch!! He highlighted the fact that many scleroderma patients were embarrassed by this problem and it affected their quality of life on a daily basis.

After an excellent lunch, the winners of the Day Draw, which raised £350, were announced. We are most grateful to so many delegates who brought raffles prizes for this event and to those who bought tickets.

Professor Jeremy Pearson was chair for the afternoon session, the first speaker being Professor Chris Denton, from the Royal Free Hospital in London. His presentation entitled ‘What our patients tell us - Lessons from the Royal Free Scleroderma Cohort’, explained what has been learned from patient feedback in the Scleroderma Unit.

The next presentation by Louise Parker, Lead Nurse Specialist at the Royal Free Hospital, updated the audience on the Royal Free Raynaud’s Clinic and explained the important role which it plays for patients. This clinic is unique in that it provides support mainly for people who have Primary Raynaud’s (who may possibly have signs and symptoms of scleroderma) but at least if this is the case, they can then be transferred to the Scleroderma Clinic under Prof Denton.

A truly inspirational talk was given by member Nicki Hunt, who has had both Raynaud’s and scleroderma since the age of 23. She is now 33. Nicki gave a very moving talk about how she lives and copes with these conditions. What came over loud and clear was her very positive attitude during which she emphasised the importance of making the most of life despite the ups and downs that living with these conditions can bring. This talk brought tears to many eyes - a very courageous young lady who has survived extreme gangrene in her fingers but never

Robert and Loraine Limond

gave up the will to overcome the pain and distress which this caused, and we were delighted to see that her fingers have now healed incredibly well.

Member Brian Medley and his daughters Suzan and Karina, made a presentation to Anne on behalf of the RSA, of £1,000 in memory of his wife Sylvia, who attended the conference last year and who had been a member of the RSA for many years.

Sylvia sadly passed away in June of this year.

Dr Marina Anderson, from University Hospital Aintree in Liverpool gave a presentation entitled ‘The Gut in Scleroderma: from top to bottom!” This very much complemented the earlier talk given by Mr Clarke and was well received.

Anne Mawdsley and Jo Kaddish ended the afternoon session with a presentation entitled, ‘Two Cold Challenges!’. In the first, Anne explained what the Cool Million Challenge is aiming to achieve and the important role which our members can play in helping us to raise a million pounds, not only by raising funds but also awareness. She emphasised that we would like to hear from members as to which projects they would be in favour of supporting. Anne and Jo then entertained the audience with photos, video clips and humourous anecdotes to illustrate their Dog Sled Challenge in sub zero temperatures in Finland earlier this year, which raised over £28,000 for research.

Saturday evening, as always, was relaxed and informal. Following a delicious buffet, Gill Kenyon and Deborah Warburton demonstrated self hand reflexology for pain relief, showing delegates how they could do this for themselves with practice.

Our thanks to all the speakers and to Actelion Pharmaceuticals UK Ltd, Dermal Laboratories and Ultrasun for their sponsorship towards this conference.

Dates for your diary 29th Annual Conference Chester - 24th September 2011 30th Anniversary Conference Chester - 22nd September 2012

Elaine Todd and Annie Hartland

John and Susanne Cleeves

Conference The Gut in Scleroderma - from Top to Bottom!

Continued from front page...

Dr Marina Anderson

The mouth Due to the tightening of facial skin, a small mouth (or ‘microstomia’) is not uncommon in scleroderma, which, coupled with the frequent presence of dry mouth (‘Sicca’ or ‘Sjögren’s syndrome’) results in difficulties biting, chewing and swallowing food, as well as sometimes troubling appearance changes. Dental problems are also frequent as a result of microstomia, and careful oral hygiene, artificial saliva/lubrication and expert dental input are essential. In addition, innovative surgery such as mucosal enhancement may be helpful in some.

The foodpipe/oesophagus This part of the gut is affected in 80-90% of people with scleroderma, with symptoms of difficulty swallowing, heartburn/indigestion, waterbrash, nausea, poor appetite and/or weight loss. If investigations are required (and frequently the diagnosis of oesophagus involvement in scleroderma is evident from symptoms), your doctor may request a barium swallow Xray; gastroscopy (or ‘OGD’), and/or manometry, which measures pressures in the foodpipe and how the gullet muscles are working to propel the food/waste through as well as acid levels in the lower foodpipe. Other more specialised tests may be arranged in some centres.

A number of consequences can result from oesophagus 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 the oesophagus/stomach, anaemia may result from blood loss from ulcers, erosions and telangiectasias (tiny blood vessel abnormalities), and aspiration of stomach contents into the lungs may result in lung damage.

Treatment Treatment aims to improve symptoms and prevent damage.

Simple advice, such as eating multiple small meals, avoiding fatty foods/alcohol, raising the head of the bed, stopping smoking and avoiding eating before bed are all very

important. However, medical treatment with tablets called ‘proton pump inhibitors’ (or ‘PPIs’, such as omeprazole, lansoprazole, pantoprazole, esomeprazole, etc.), are often extremely effective, although it is to be noted that at 2 to 3 times the ‘usual’ dosage is often required.

‘Promotility’ drugs (e.g. domperidone, erythromycin, metoclopramide) may help the food/waste through the gut in some. In a few stubborn cases, an operative approach to reflux may be required (Nissen fundoplication, which can now be done by ‘keyhole’ surgery). In addition, we need to remember that upper gastrointestinal problems are common in all people, whether they have scleroderma or not, and sometimes we find the common ‘helicobacter’ bug (which causes ulcers) which responds to a course of antibiotics. In addition, some may find alternative therapies, such as acupuncture and TENs, helpful.

The large bowel This part of the gut is frequently affected in scleroderma, 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 without scleroderma. Large bowel problems may be investigated with barium enema Xray, sigmoidoscopy/colonoscopy (a camera test) and/or biopsies.

Treatment is largely symptomatic. A dietary plan should be devised based on symptoms:  Constipation: lots of water, avoid high fibre laxatives/food  Diarrhoea: avoid lactose, add soluble bran, anti-diarrhoeal (loperamide)

The small bowel

The back passage (anus/rectum)

Symptoms from the effects of scleroderma on this middle part of the gut include abdominal pain/bloating, diarrhoea, pale motions, difficulty flushing motions, constipation/obstruction, weight loss and malnutrition. Your doctor will carefully monitor your weight at each attendance, and may organise a number of tests (e.g. abdominal Xray, barium swallow and follow through Xray, gastroscopy/duodenoscopy/ small bowel aspirates & biopsies, breath tests for bacterial overgrowth, measurement of fat levels in motions, abdominal ultrasound).

Due to reduced capacity and tone at the back passage, symptoms of constipation or incontinence may occur.

Incontinence is under-recognised in scleroderma. Investigations are not often done, but anorectal manometry may be requested to measure pressures at the anus/rectum abnormalities.

As a consequence of middle gut involvement in scleroderma, the following may 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 by treatment with cyclical antibiotics, medications to promote gut motility, ‘parenteral nutrition’ via gastrostomy/ jejunostomy (i.e. special feed directly into the stomach or jejunum), ‘TPN’ or total parenteral nutrition (i.e. special feed directly into the veins). In rare cases, surgery may be required.

Treatment of the gut Treatment is usually symptomatic and physiotherapy may help. In some, a sacral stimulator or specialised operation may relieve symptoms.

So what is the future?

We are working towards the important goals of:  Improving awareness, particularly of lower gut problems  Improving assessment and measures of bowel problems  Improving treatments: By optimising available treatments 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 the fibrosis Stopping inflammation / reversing immune system abnormalities The above is a summary of Dr Marina Anderson’s presentation at our annual conference.

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Conference An Inspirational Talk Changes were becoming apparent Two years later, aged 25, changes in me must have become apparent. The company I worked for were keen to have Health & Safety and the ergonomics team look after me. My fingers began to change, stiffen - and odd things began to happen, silly injuries and other tell tale signs that only made sense years later. Not willing to face any of it, I decided 'the disease wouldn't beat me’ and I went off travelling the world with 2 of my best friends! It was only years after my return that my parents, specialists and friends said they knew it wasn't the best idea I'd had but they knew they wouldn't be able to stop me from going.

Nicki Hunt (right) with her parents Michael and Sandy

When Anne first asked me to do this presentation my immediate reaction was 'Really? Why me? What have I got to say of any interest?' I count myself as one of the lucky ones so it took a little while and persuasion from friends, to realise that actually, I have been through a fair bit over the years and I do deal with stuff every day but it's just become part of me and everyday life. But to some this may all be new and maybe I can help others by just sharing my experiences.

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

Referral Three years later I was lucky enough to have a GP who had the insight to refer me to a rheumatologist at Addenbrookes in Cambridge, just in case there was something more to my Raynaud's. After blood tests and a capillaroscopy, I was diagnosed with scleroderma. Of course my parents and I had done our internet research and had scared ourselves something silly with what we found, so when the consultant confirmed it, we were devastated.

How do you process the fact that you have a chronic debilitating condition that could affect you for the rest of your life, when you're 23 years old and have all to live for? I had to tell my boyfriend, my friends, my colleagues. I wanted them to be aware of what could happen to me but I wanted to protect them too. I didn't want them to be as terrified as I was.

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

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

We managed northern Thailand, Bangkok, Ko Samui, Vietnam and Singapore. It was a fantastic experience, despite my struggles but after 9 weeks I was forced home. I had no energy, my joints and bones ached. I was tired all the time, not hungry, finding it hard to breathe but blaming the humidity. I wasn't sleeping and I was losing weight by the day. I couldn't bend down to put my shoes and socks on, I struggled to lift my arms to brush my hair and I could no longer lift my rucksack. But I didn't want to go home, it felt like giving in to the disease, failing, my fears were becoming reality. When I got home I was a mess; I only had the energy and mobility to sit on the sofa all day - my joints and muscles hurt, I couldn't get comfortable just sitting or sleeping, I was weak and down to around 7 stone in weight. I could hardly walk or get dressed. After a lot of persuading I gave in and went back to my consultant at Addenbrookes, where I was promptly admitted to hospital. I had tests galore; bloods taken virtually 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 was discovered, I was also diagnosed with Lupus, myositis and pernicious anaemia, finally concluding: mixed connective tissue disease. I was in hospital for six weeks.

Medication I was given intravenous steroids over 3 days to kick start me back into action and a simple walk down the ward corridor to the bathroom became my greatest achievement in months. I started hydrotherapy to help build my muscles and gain strength. I went home with a mountain of medications, a cocktail of steroids, immuno-suppressants, blood thinning pills, pills to help my digestion and supplement drinks. I was issued with a disabled badge and ferried around in a wheelchair. I was back living with my parents, so they could help feed me up, look after me and generally do all they could for me. I began physio for my hands and occupational therapy to provide me with aids to help with everyday life. I was taught how to try and balance my life-style but my recovery didn't happen over night - it was a long slow process and a 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, my boyfriend of 8 years, broke up with me. I was devastated. I blamed myself, I blamed my health, I blamed him but do you know what, it could well be the best decision he ever made. It made me more determined than ever, a kind of 'I'll show you' attitude appeared. I wanted 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, go dancing and I did, but at a price.

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

Nicki’s talk continued .......

06

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

In 2006 age 29, I picked up a muscular-skeletal virus. It hurt to breathe, 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 without sharp shooting pains in my chest. Later in the year, with little improvement, there was concern it could be the beginning of pulmonary hypertension, so I was admitted to Papworth Hospital in Cambridge for more tests and iloprost. Thankfully it was just pneumonia and slight fibrosis of the lungs. But since then it's been my chest that is my tell-tale sign for over doing it. When I get tired and run down, my breathing becomes shallow and my chest gets tight and uncomfortable.

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

In 2008 I had a particularly nasty ulcer on the forefinger of my left hand. I'd already had 2 doses of iloprost that year but it hadn't seemed to help. It got worse, and went black and the pain was horrific, to the point where it was affecting my sleep and concentration. I was admitted to hospital again. After several more weeks of excruciating pain and the blackness increasing, I was told there was nothing more the local hospital could do. I was at an all time low again, not being able to fend for myself, spaced out on pain killers, fearing that I may lose half my finger, whether it be from amputation or just rotting away. The worries mounted up; would it happen to other fingers too at a later stage? What was to become of my hands?

Feeling brighter I was sent to the Royal Free to see Prof Denton and his team, where I 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 on Viagra - which has of course, caused untold amounts of laughs. I was also referred to have an operation called a digital sympathectomy on my hand to take away the tiny nerves endings at the base of my finger, so the blood vessels would remain open.

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

A while after the operation and another dose of iloprost, the blackness scabbed and began to come away. Now I would get the answers to my fears. What would be left under the scab? Would it be hollow? Would I lose my nail forever? How grim would it look?

Three months after the operation the scab came away and I was pleasantly surprised with what was left. It's not unattractive, just a little 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 are never far from the forefront of my mind. It doesn't consume me because I don't let it - I find something else to do, busy myself with friends and family, find myself a project to work on but there's no getting away from the fact that with my now wonky misshapen stiff fingers, most simple things have become a bit of a chore.

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

butterfly backs on my ear-rings, that can take minutes rather than seconds, providing I can hang on to them at all. Trying to get a cash card out of the hole in the wall can also be tricky, with or without gloves on. As for reaching into my bag and trying to avoid knocking my overly sensitive fingers with anything hard or sharp - that's impossible! I could go on forever with examples. We learn to adjust, though it takes time and can be frustrating but we do it because we have 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 where those fingers can't take the touch of a key for weeks on end, another one seems to take its place.

Asking for help I feel like I'm slow at everything now. Getting dressed, going to the loo, 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 the point where I've asked a taxi driver to undo the back of my dress when dropping me home after a wedding - I'd have had to sleep in it otherwise! My friends will automatically take my bags from me, and are ready to do up the fly and button of my jeans when necessary. But they still call me a nightmare because I am a little too independent for my own good at times - they would much rather help 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 honest and tell them how you feel. I always thought that by expressing the way I felt was moaning but you know what, we have a right to say how it is. Explaining what the diseases do and how they make you feel will help people to understand.

They may never fully comprehend what I go through as I open the fridge door or prepare to step inside a supermarket. Or how frustrating it can be just trying to put on a pair of tights but unless we actually explain when we're asked how we are, or what's happening, how will they ever know? I bet we've all used the standard “I'm fine� line, which I'd say is perfectly OK to say to strangers but not to friends and family. Sometimes it helps to be honest, 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' to talk to, like a counsellor or psychotherapist, is not a sign of weakness, it's a sign of strength and courage. If talking doesn't completely help and you need anti-depressants to see you out of a bad 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 tried all sorts of things in the past - crystal healing, yoga, acupuncture, flower power, reflexology, etc. but there's nothing like telling someone your fears to make you realise that you are human and some of your thoughts are only natural.

I recognise now that everyone's problems are their own and it doesn't matter whether you think yours are big or small compared to anyone else's, they're yours and you are entitled to feel exactly how 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 for that, but for fear of falling and further damaging my hands. I don't go on bike rides as I don't wish to risk death by not being able to squeeze the brakes. I don't play tennis/badminton anymore without the risk of thwarting my opponent with the racket when it slides from my dodgy grasp. But I can drive, I go to work - I'm lucky that I can work from home when I need to. I've found I'm quite good at baking cakes.

It's not easy and can take forever but where there's a will there's a way. 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 always something around the corner to test me but I'll deal with that when it comes to it.

Continued on page 8

07

Conference An Inspirational Talk Continued from page 7

Relationships As for relationships, old friends and family are my comfort zone.

They know my history; I don't need to explain myself to them. I sometimes find it hard meeting new people, trusting them. It's my confidence but I'm getting it back slowly.

But someone new? A new man, even... how will they understand all of this? why would anyone else want my condition to become part of their life? how would they cope with the fact that I often have indigestion at night and sleep on a hundred pillows? what will they think of my awkward caresses. Without talking things through with people, these issues can fester and get so big in your own mind.

Negativity breeds more negativity so try seeking out the positives and if you find the courage to share your thoughts with someone, it becomes real and they'll help you to deal with it. Just hearing “why wouldn'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 like to think that I was chosen to test my resilience, courage and strength.

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

I can't tell you how to cope or how to feel, instead I've just given you a brief insight into my world and it's probably been more therapeutic for me than you but if anything I've said helps any of you in 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 to be edited slightly to fit into Hot News but without doubt this talk was the most inspirational one of the conference and brought many a tear to the eyes.

Thank you Nicki for sharing your experiences with us.

One Stop Raynaud’s Clinic Update

Louise Parker

Clinic Background

Treatment Options

When patients are referred by their GP to the Royal Free Hospital in London, they are given an appointment to attend either the Raynaud’s or scleroderma clinic. The Raynaud’s clinic has been allocated appropriate resources and time, the aim being to provide expert advice and care for people with this condition.

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

On the day

The Lead Nurse sees the patients to gain a full history and make an assessment. The appropriate education, advice and recommendations given are tailored for each individual. Tests such as thermography, capillaroscopy and blood tests 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 of clothing rather than one thick layer, as the air trapped between the layers will help to insulate your body. Tight clothing should be avoided as this may restrict your blood flow.  Wear some form of headgear, as a considerable amount of heat is lost from the head area. The trunk should also be kept warm to protect the major organs of the body.  Heating aids such as hand and foot warmers can be very useful (see enclosed mail order leaflet).  Eat for warmth - Your body needs plenty of warming ‘fuel’ if you are going to brave the cold. Start the day with a bowl of hot porridge or cereal with warm milk.  Try to eat lots of small meals to maintain your energy and heat levels. Plenty of hot drinks especially between meals and before retiring to bed are essential.

08

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 Clinic The clinic has an integrated reporting system and follow up depends on what the tests show. A comprehensive letter with specific information is sent to both the GP and patient. The service is well known by the local GP network. However, referrals are taken from further a field and the clinic is constantly establishing links with other hospitals.

Conclusion The 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 specific patient group.

Louise Parker, Lead Nurse - Connective Tissue Disease Royal Free Hospital This article was taken from Louise’s talk at the conference. As a result several members have asked their GPs to refer them to this clinic.

Fundraising Coastal Walk & Line Dance Elizabeth Threfall and Kevin Giblin raised £1,075 by taking part in the Wirral Coastal Walk and by holding a Charity Line Dance.

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

Wedding Anniversary Celebrations

Golden Wedding Anniversary Brenda and Mike Etherington

Diamond Wedding Anniversary Mr and Mrs Ramsell

Golden Wedding Anniversary Ann and Bruce Whittle

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 at the Plum Fair in Worcestershire together with the help from members of their local group. Many thanks to all! These photos were taken at our Annual Conference.

Maureen and Jacky Collins seen here with Anne Mawdsley, raised £100 for the RSA by collecting change using their Percy Box.

RRP

Always read the lab l

09

News Living With Raynaud’s To many people Raynaud’s just means cold hands - if only! The majority of our members have Raynaud’s which affects their daily lives. How often do we hear “My doctor told me to buy a warm pair of gloves” or “Just try and keep warm, there is nothing I can do for you.” Not very helpful and could something have been missed that a simple blood test could have shown?

We know that Raynaud’s can vary from one person to another but I think last winter proved that in the majority of cases, it is more than just a nuisance but a big intrusion on one’s life requiring many changes in lifestyle.

Making sure the heating is on in good time in a morning helps, as does putting clothes on the radiator or in the airing cupboard overnight. Then comes the layers of clothes starting with the thermals - 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 just discovered that using a thermogel handwarmer can help to remove the thick layer of ice before using a scraper. Even wearing gloves can still be agony for those hands and then the car is cold inside and it takes a while for the heater to have any effect. This start to the day can be a problem for anyone but if you have Raynaud’s it is sheer misery.

Shopping can become a nightmare. The frozen foods aisles in supermarkets are the worst as a change in temperature can bring on a Raynaud’s attack within minutes. Paying for goods at the checkout is another difficult task when you simply cannot feel your 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 in change! There have been times when my hands were so dead and 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 many things which can help but when you try to lead a ‘normal’ life, it is impossible to stay in an ambient temperature all the time. The RSA provides leaflets containing tips on keeping warm as well as a mail order leaflet (copy enclosed), containing ideas for a variety of heating aids, gadgets and clothing which have proved to be helpful.

How many times have you gone out for a meal and sat in a restaurant where the air conditioning is blasting down your neck or travelled on an aeroplane or train where the cool air makes you

feel really uncomfortable? It is bad enough in the summer but why it is needed in the winter is beyond me. I always carry or wear a neck scarf so that if I am in this situation I am prepared.

Tasks around the house can become a challenge - having the energy to dust and hoover is one thing but it is the everyday simple jobs such as opening jars, cans, peeling and preparing vegetables, even washing up and drying crockery and cutlery, getting food from the fridge or freezer - milk bottles which crash to the floor (better with cartons) but how do you manage to open the packaging which many foods come in when you have painful fingers? With great difficulty is the answer!

At this point I should mention feet as it has been highlighted at two regional meetings lately, that the speakers concentrated on hands and said very little about feet. Of course they are affected and trying to walk with dead feet is not easy when they are very painful. Trying to find good comfy shoes is quite a challenge but certainly worth putting the time and effort in. Chilblains are also common in people with Raynaud’s as they are caused by poor circulation.

It can be very difficult for mums with young children, trying to dress youngsters, prepare meals etc. and often having to push prams and pushchairs on cold days. I also feel concerned for the elderly, especially those living alone, when the cost of heating can become prohibitive and many find that they have to virtually live in one room in order to keep warm. Raynaud’s can cause people to become 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 we do understand and we care. With careful planning you can overcome some of the problems but it isn’t easy especially as other people often think you just have poor circulation. I am always happy to talk problems through with members on the telephone, whether it be Raynaud’s or scleroderma. Speaking to someone who shares your problem often helps and at least you know that you are not alone.

If you can help us to create awareness, especially during Raynaud’s Awareness Month (February 2011) please let us know.

Anne Mawdsley

Last chance to buy your Christmas Cards!

Noel Cards

Pack of 10 Noel cards Size 228mm x 86mm Price £3.50 per pack (plus p & p)

Penguin Cards Twin Pack

Pack of 10 cards (5 of each penguin design) Size 121mm x 121mm Price £3.00 per pack (plus p & p)

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

10

News LOCAL CONTACTS Eastleigh, Kathy Allen

02380 610678 Cumbria, Ruth Randall

01229 835727 Manchester, Gill Holden

01942 877259 North East, Jessie Pickering

01388 527840 Fife, Rose Bevan

01382 552272 Worcestershire, Shirley Lynch

01386 553392 Burton on Trent, Helen Nutland

01283 566333 Ext. 5032

The Prescription Charges Campaign The RSA has joined the campaign to abolish unfair prescription charges.

The Prescription Charges Campaign brings together 24 charities calling on the Government to abolish unfair prescription charges for people with all long-term conditions.

Since April 2009, people with cancer no longer have to pay for prescriptions. This is wonderful news, but many more people in need are still waiting. There is plenty of evidence that many people with long-term conditions currently struggle to afford their prescriptions, and often choose not to fill prescriptions because of the cost.

Contacts Wanted

Bristol, Margaret Goff

01454 310225 N. Ireland, Patience Bradley

02890 592370 Mobile: 07966 416553 North Wales, Kate Owen

01492 515834 Shipley, W Yorks, Bev Myers

07903 448038 Surrey, Fay Collings

01737 762005

Pauline Reece would like to hear from others in the Neath area of Wales who would be interested in meeting for a chat, coffee, support and/or fundraising.

We have several Mums who have young children with Raynaud’s and they would like to make contact with others.

Please write to or email members via Head Office and we will forward on your correspondence.

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

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

The RSA Team

(For Pulmonary Hypertension Enquiries)

Specialist Nurses Royal Free 020

7830 2326

Sue Brown Bath

01225 428 823

Liz Wragg Manchester

0161 206 0192

Specialist Nurse 0113 Leeds Jan Lamb Liverpool

3923 035

0151 529 3034

Karen Walker Newcastle upon Tyne

0191 223 1503

Audrey Hamilton Belfast 02890

561 310

Paula White & Julie Ingall Portsmouth 02392 286 Jayne McDermott Sheffield 0114 Lucy Pigram Brompton

935

2711 627

0207 352 8121

(For Lung Enquiries)

Beep 7112

Steve McSwiggan Dundee 01382

633 957

(Only available Mon, Tues & Wed mornings)

The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice.

It should be emphasised that the nurses who run the advice lines also have very busy schedules and therefore on occasions you will get an answerphone to leave your details for the nurse to get back to you when available. The advice lines are not intended for use in an emergency.

Online Shop Warmest wishes for Christmas and the New Year

Karen, Hannah, Fay, Anne and Fiona

NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore 020 7472 6354 Royal Free

Please note that the office will be closed over the Christmas period and will re-open on 4th January. Orders placed via the online shop will not be despatched during this period, last orders being sent out on Tuesday 21st December.

However, we cannot guarantee that orders will arrive in time for Christmas unless ordered the week before.

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

11

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StormWalker Heated Jacket

Please visit www.exo2.co.uk for more information on our whole range of products Tel: +44 (0)1698 746347

• Heat panels located at the lower back and kidney area to make sure that warmth is carried around the body quickly. • Warm those frozen fingers with our new heated pockets, adding to the comfort already delivered to the kidneys and creating a 'virtuous circle' of warmth around the upper body. • With easy to use zip-off sleeves in the superb windproof, waterproof and breathable AirXtream fabric, you can leave those mid-layers in the wardrobe and just enjoy your own personal climate control system.

HeatSole Heated Insoles • Heat panels self-regulate at approximately 45oC to thaw out frozen toes (or stop them freezing in the first place!). • Ideal for ski-ing, hiking, motorcycling, fishing, riding, hunting and for all those struggling with poor circulation. • Tiny Li-Ion Power Packs with pouch clips & LED's delivering 5-7 hours heat per charge (two power packs and one charger per pair). • Velcro strap for clipping power pack to lower leg if not wearing boots (under trousers/jeans etc.).

Raynaud’s members receive 25% discount

HotRox Hand Warmers, the end to cold hands! • HotRox Rechargeable Hand Warmer • Reusable - Up to 500 Charges • Turns on and off at the flick of a switch • Heats up in 15 seconds • Provides heat for up to 6 hours • No Boiling, No Burning, No Fiddle, No Fuss!!!

HotRox hand warmers are a brand new way of keeping your hands (and other parts of your body) warm. These reusable hand warmers are recharged by plugging them into the wall or a computer USB port. Hot Rox hand warmers are simple, safe and easy to use. You turn them on, you turn them off and they are reusable 500 times! What more could you want?

We think these would make an ideal Christmas Gift - Price ÂŁ29.99 plus ÂŁ2.00 p&p. Make cheques payable to the RSA. Please make sure that you include your name and address with your order and send to the address below.

PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION

Charity Reg. No. 326306

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 MBE Raynaud's & Scleroderma Association Š Copyright 2010. All Rights Reserved.