Hot news 2014 Vol 1

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Hot News Issue No. 126

Volume 1 2014

In this issue...

Thermal image of a Raynaud’s attack

World Congress Page 4

www.sclerodermasociety.co.uk

Working in Partnership

Charity Reg. No. 286736

Have you seen the new version of our SO RARE card?

We have changed the picture to a thermal image of a hand during a Raynaud’s attack. We hope you like it!

Salford Update Page 5

SORE SWOLLEN FINGERS

RAYNAUD’S REFLUX & SYNDROME HEARTBURN

Scleroderma is SO RARE but the early warning signs are there.

These 3 symptoms are often the first clues.

Doc Spot Page 6 & 7

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

For more information:

Raynaud’s & Scleroderma Association 01270 872776 Scleroderma Society 020 7000 1925

DATE FOR YOUR DIARY! The RSA’s annual conference will be held on the 6th September, 2014, at the Mercure Hotel, Chester. There will be more information in the next edition of Hot News and on our website soon. Contact info@raynauds.org.uk or phone the office on 01270 872 776 if you are interested in attending and want to secure a place.

Fundraisers Page 10

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Chief Officer Update

Elizabeth Bevins

Firstly, to all those who continue to support the RSA and the work we are doing, our heartfelt thanks are due – your continued support is hugely important.

Welcome to all new members and thanks to existing members who have renewed their subscription with the RSA, including a number who have taken life membership. To those who work tirelessly for the good of the charity and for those who benefit from its work, including known and anonymous donors, contributors and fundraisers who knit, bake, walk, run, sing and a myriad of other activities, THANK YOU! Raising awareness of Raynaud’s and scleroderma to make sure more people know about living with such conditions is a key role of the charity and those who support it. The RSA team has listened to feedback from members and after subsequently reviewing the content of Hot News, changes have been made. Do continue to let us know what you think by phone, letter, email or on Facebook or Twitter!

Raynaud’s can be miserable – mild or severe, it can be frightening. Raynaud’s Awareness Month (RAM) 2014 involved radio interviews and various newspaper articles about the condition – thanks to all those who made a special effort in February! The RSA continues to work more closely with the Scleroderma Society and we were extremely pleased to use ‘Get Your Gloves on for Raynaud’s Awareness Month’ for the first time in 2014. Other countries had used their slogan last year …and we thought it was perfect for the UK’s RAM. Thanks are due to the Scleroderma Society with whom we are working with to ensure that, in future, we don’t duplicate precious time spent by those kind and dedicated clinicians who have, historically, helped each charity separately.

The British Society of Rheumatologists (BSR) event in Liverpool this year will see both the Raynaud’s & Scleroderma Association and The Scleroderma Society sharing a stand,

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something that is welcomed by UK rheumatologists and clinicians.

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

World Scleroderma Day is held on the 29th June - please let us know what you and/or your hospital are planning to do to raise awareness. The RSA will be celebrating World Scleroderma Day at the Royal National Hospital for Rheumatic Diseases in Bath this year with Dr John Pauling and members of the team on 3rd July, 2014. People will be welcome from across the UK and further details will be available on the RSA website (www.raynauds.org.uk). Call the RSA office if you are interested in coming along.

As you know, charities generally have been subject to changes over the last few years and the Charities Commission and HMRC are two of the agencies with whose rules we at the RSA must abide! Making our work ‘transparent’ in times of change remains vital. A step in the direction of using our limited resources better has been setting up online banking facilities last year. The RSA encourages supporters and members to renew 'online' where possible, to help us process things more efficiently ‘back at the ranch’ - so special thanks are also due to those who were able to make use of the online banking facilities that the RSA now offers. Now we certainly don't wish to interfere with the ways in which you choose to send funds to the charity but we thought you might be interested to hear that each cheque takes approximately 9 minutes to process (6 minutes on initial administration and a further 3 to bank to the accounts and of course a trip to the bank)…which is why we’ve been ‘pushing’ online options for membership and purchases from the RSA Trading company. At the end of the day, whichever way you choose to pay and donate, be assured that your support is very much appreciated!

The RSA Conference in 2014 will be held in Chester on Saturday 6th September.

We’d love those of you who can attend to put the weekend in your diaries. Professor Denton, our Vice President, has kindly offered his support. So, whether you are joining us for the first time, the 30th time…or somewhere in between, you will learn about current ways of managing conditions as well as making some new friends. Day delegates or those planning a weekend including Friday and/or Saturday nights will be welcome. We have included a conference booking form on the back of the carrier sheet on which your address is on. You can use this to book a place at the conference, however we would be most grateful if you can phone the office and pay by card. Not only does this save us time and resources, it also saves you a stamp!

In this edition you will find a piece on the Systemic Sclerosis World Congress on page 4, held in Rome in February.

The charity is running our annual raffle – the star prize is a voucher kindly given by Cumbrian Cottages. We’d be grateful if you can sell the tickets, or give them to someone who will do this for you and send the proceeds to the RSA. However, we also respect that you may not wish to take part. If that is the case, please re-cycle them locally. We are distributing them with the newsletter as it is the most cost and time efficient way, but don’t feel pressured.

Alternatively, if you need more, contact the office and we will send you some!

PLEASE let us know if you are a UK tax payer for Gift Aid purposes so the charity can make more of the resources you so kindly share with us….and now let’s talk Wills - Although this is something we might feel uncomfortable talking about, so many people wish to give something to charity yet are unsure which one. If you can encourage anyone in that position to

A word about the RSA Trading Company…you may need to be reminded that every penny of profit from the ‘online shop’ is donated to the charity. In 2013, as we began supplying the overseas market using a new, purpose built website in August, the shop donated more to the charity than the previous year. We know we can do better and we’d like to increase trading in the UK and abroad. Please let us know if you come across products of particular use to Raynaud’s or scleroderma patients…and those that are useful to everyone in cold weather and we’ll investigate whether it is feasible to sell them in the shop – thank you!

What a wet time this winter has proved to be!

No arctic winds and sub-zero temperatures but rather, relentless rain and wind – so those with Raynaud’s are ready to embrace the longer days and warmer temperatures that I trust are in prospect for spring and early summer!

Enjoy the read…

Best wishes

Elizabeth Bevins Chief Executive Officer

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News We are delighted to be running our 2014 Raffle!

The main prize this year is a £450 voucher for Cumbrian Cottages to be used for a stay at any property featured within their extensive portfolio. To tempt you into buying a ticket, you can have a look at their properties here: www.cumbriancottages.co.uk

can save on postage costs by including tickets with your Hot News. As you can appreciate, being a small charity, we need to save on costs wherever possible. If you cannot sell the tickets, please either pass them on to someone who can or put them in the recycling bin.

Other prizes include a night at the Mercure Hotel, Chester, M&S vouchers, paintballing vouchers, a Portmeirion cake stand, Portmeirion trinket box and a meal for two at the Rembrandt hotel, London.

The tickets sell for £1 each. The buyer fills in their details on the slip, and keeps the main part of the ticket. You post the stub with the buyer’s information on the back to us, with a cheque for the money, made payable to “RSA.” Don’t worry if you don’t sell all the tickets, please just post whatever you manage to sell back to us. If you would like more tickets to sell, please get in touch with head office and we would be delighted to post more out to you.

We have included a couple of books of raffle tickets with this newsletter, for you to either buy yourself or to sell on. We appreciate that you might not have the time or health to sell these however, we

The closing date for the raffle is Friday 27th June. All ticket stubs will be entered into the draw and Fiona Bruce MP will pull out the winners on the 4th July when we celebrate World Scleroderma Day. We will then contact all winners directly, and announce the full list of winners in the next edition of Hot News.

Thank you to everyone who enters and most importantly, good luck!

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February was Raynaud’s Awareness Month!

The team at Head Office were working frantically to try and spread awareness of the massively underdiagnosed Raynaud’s phenomenon. We spread the word virally on our Facebook and twitter pages and asked our followers to share the poster (on the left hand side) using #ram and #getyourgloveson. We got a lot of support and even got Dr Hilary Jones to mention it on his twitter account. Liz gave radio interviews to BBC Radio Stoke and Pure Radio, amongst others, and the Mirror ran an article featuring Jenni Falconer.

We are still looking for support despite Raynaud’s Awareness Month being over.

If you would like to generously donate, you can do so by texting RAMS14 £amount to 70070. The money donated will either be deducted from your credit or be included on your next bill.

Thank you for your support.

World Scleroderma day

is held on 29th June and aims to

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

FESCA held the first World Scleroderma day in 2009, the poster from this is shown. FESCA campaigns for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases, are not forgotten, but afforded the consideration and attention of other more common diseases.

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

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Rome 3rd Systemic Sclerosis World Congress Rome, Italy February 2014

Rome became the focus of the scleroderma world for a few days in February this year, with the clinicians conference and the ‘patient’ conference running concurrently. Members of the medical fraternity with an interest and/or specialism in various aspects of scleroderma, and the Raynaud’s associated with the disease, descended on Rome – not just from across Europe, but across the globe. The passion and dedication of those involved was almost palpable!

The Federation of European Scleroderma Associations (FESCA), of which the RSA is one of the 2 member organisations in the UK, played a key role in the Congress and afterwards held its AGM. FESCA’s president, Anne Tyrrell-Kennedy, contributed to the opening ceremony of the Scientific Programme presenting ‘The Patient Perspective’.

The scientific programme for medical professionals and the patient programme ran separately, with the patient conference benefiting from the input of experts from Europe, America, Canada, Australia and South America. The patient audience, comprised of people aged from about 20 years upwards, mirrored the multi-cultural mix.

Fortunately for the RSA, the Scleroderma Society and those whose mother tongue is English, both conferences were conducted in English – including presentations, discussions and question panels, although translations services in French and Italian were available to those attending the patient programme.

Following a round table discussion between patient organisations to which the RSA contributed on Thursday, the congress began in earnest on Friday with presentations, workshops and a poster session covering various aspects of scleroderma, showcasing the collaborative work of medical teams from across the world.

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Medical experts gave presentations on a variety of topics – Professor Van Laar (UK) on ‘Why did I get scleroderma and will I be cured?’ and Alan Tyndall (Switzerland) ‘Transplants of different kinds – are they for me?’ presented early interpretations from the latest research into stem cell therapies - about which the RSA will learn more later in the year. Oliver Distler shared insights about why scleroderma patients find breathing difficult – focussed on the fibrosis of the lung reducing capacity for oxygen transference. Janet Pope (Canada) provided medical information on the digestive process; Paul Biffa from Salford presented ‘Hand and face exercises’ and Italy’s Roberto Rozza gave an insight into dental techniques used in his country.

The patient perspective and tips on how to manage various aspects of scleroderma were given by Kim Fligelstone about lung issues, Susie Hoare (Scleroderma Society) on tips for those with gut and intestinal problems; pregnancy and sexuality from colleagues in Italy, the Netherlands and Sweden; breakout sessions on Juvenile Scleroderma, breathing exercises from physiotherapist colleague Jadranka Brozd from Croatia and a ‘men only’ session led by Danish colleague, Kent Krarup. Different patient perspectives on transplants were given by Gabrielle Verzi (Italy) and Jessica Thonen (Netherlands).

Annelise Roennow (Denmark) gave tips on useful equipment for those with scleroderma.

Saturday’s session began with an explanation of the new EULAR-ACR (European League Against Rheumatism and American College of Rheumatology) classification of Systemic Sclerosis published late last year.

Various classifications have followed original proposals in 1980 and Frank van den Hoogen (Netherlands) explained the improved sensitivity and specificity of the new one. It includes the three ‘hallmarks’ of systemic sclerosis (SSc) (fibrosis of the skin and/or internal organs; production of certain autoantibodies and vasculopathy).

However, one criterion is sufficient (and given a high weighting) for a classification of SSc – skin thickening of the fingers extending proximal to the metacarpophalangeal joints.

Professor Denton (UK) talked about new treatments in scleroderma at the same time as colleagues from France, Spain and Italy

talked on the same topic in breakout rooms, in their own languages. Marco Matucci-Cerinic (Italy) gave the Italian perspective on treatment of digital ulcers (DUs), and Australian nurse, Barbara Gemmel gave tips on care of ulcers, whilst Grazia Tassini (Italy) and Laszlo Czirjak (Hungary) gave a patient perspective. The facial camouflage workshop was well attended and the presentation by Antoine Fauconneau (France) gave information on lasers and corrective make up. Final sessions addressed coping with scleroderma – the psychological aspects (Brett Thombs, Canada), fatigue (Janet Poole, USA) and a carer’s perspective (Robyn Simms, Australia).

We plan to share further information from different aspects of the congress in more depth in later editions. In the meantime, do look up the work of the clinicians who are working in areas of particular interest to you and share your thoughts through HealthUnlocked, by email, facebook, tweet us…or write us a letter. A flavour of a presentation given is below….

Janet L. Poole, PhD, OTR/L, Occupational Therapy Graduate Program, University of New Mexico, gave a really interesting talk about managing fatigue.

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

She explained the importance of good nutrition, establishing good sleep habits, remaining active but taking frequent rest.

Good posture, using household gadgets including, if possible, a dishwasher and organising storage so that frequently used items are to hand. She encouraged people to prioritise tasks and ask oneself fundamental questions such as “do those sheets really need ironing?”

So, collaborative research and analysis is definitely benefitting our understanding of the triggers and mechanisms involved in developing scleroderma. Together with the announcement of a new classification of the disease to aid specific research, we are looking at better management NOW and in the future. The key message is still ‘early diagnosis means better management and quality of life’…which is why raising awareness and lobbying for better understanding of scleroderma and autoimmune disease generally remains so important.

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Salford Royal Hospital News Nutritional Studies Update Salford Royal Hospital is a large referral centre for patients with systemic sclerosis (scleroderma) as well as patients with complex nutritional problems. In addition, Salford Royal is academically linked to the University of Manchester. It is this arrangement that has enabled the Rheumatology and Gastroenterology Departments to work together to study nutritional and gastrointestinal problems in patients with systemic sclerosis.

Approximately 90% of patients with systemic sclerosis develop problems related to their oesophagus, stomach or bowels (gastrointestinal tract). When severe, these may lead to weight loss.

Some patients develop problems which means that they require long-term intravenous feeding in order to meet their nutritional needs. Despite this, little is known about why some patients develop more severe nutritional problems or why some patients have more severe gastrointestinal symptoms.

Current projects, kindly supported by the Raynaud’s and Scleroderma Association, are being undertaken by Dr Harrison, a Gastroenterology trainee, along side Dr

Lal and Professor McLaughlin, Gastroenterology consultants, and Professor Herrick, a Rheumatology consultant. These projects are outlined below: ‘Our first study reviewed the use of home intravenous feeding. We found that over a 22 year period, 25 patients with systemic sclerosis commenced home intravenous feeding under the supervision of Salford Royal. All of these patients had significant gastrointestinal problems and many had previously failed to tolerate tube feeding directly into their stomach or small bowel.

We found that home intravenous feeding was relatively safe when used by patients with systemic sclerosis. However, most patients needed help, from a nurse or their family, to connect and disconnect their feed. Therefore, we were able to conclude that home intravenous feeding is a safe option for patients, with severe gastrointestinal problems, who are unable to consume sufficient food to maintain their weight.

Our second study, which is ongoing, aims to identify the proportion of all patients with systemic sclerosis who have nutritional

problems and to look for features associated with the development of these nutritional problems. This study involves the assessment of each patient’s disease status, gastrointestinal symptoms and nutritional status. To-date, 170 patients have been recruited and are currently being followed up. Provisional results show that, when using an approved scoring tool for nutritional risk, 12% of patients would be considered to be at high risk of malnutrition and 14% at medium risk. A more detailed analysis of these patients’ characteristics is currently ongoing and will allow the identification of any features more likely to be present in patients with a low weight or weight loss.

Our third study aims to investigate the relationships between stomach related symptoms, the speed at which the stomach empties, feelings of fullness and problems in the involuntary (autonomic) nervous system. This study started in January 2014.

We are very grateful to everyone who has kindly given their time to participate in our research.’

Researchers see the Light over New Treatment! that affects connective tissue.

Telangiectases tend to occur on the face, neck and upper limbs and can cause psychological issues for patients.

Currently, doctors use laser treatment to blast the telangiectases and destroy them but this treatment can be painful at the time and result in bruising afterwards so researchers have been looking for an alternative because of this.

Dr Graham Dinsdale and researchers at Salford Royal NHS Foundation Trust have tested a new way to treat a disfiguring skin condition, in a study funded by the RSA. Telangiectases are knot-like clusters of blood vessels on the skin that can occur in 30 to 50 per cent of patients with systemic sclerosis, a potentially serious and incurable auto-immune condition

Salford Royal is one of only a handful of Trusts in the UK specialising in systemic sclerosis, also known as scleroderma, and Consultant Rheumatologist Ariane Herrick, also Professor of Rheumatology at The University of Manchester, is a leading UK expert in the condition.

As part of the Trust and University’s wide range of studies to improve care of scleroderma patients, researchers tested using intense pulsed light (IPL) instead of laser treatment-IPL, being a

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

Their pilot study treated 19 patients with telangiectases, using IPL on one side of the face and laser treatment on the other. They had three treatments over the course of eight weeks before the results were analysed using close-up photographs and specialist imaging.

The research showed that the effects were roughly comparable but IPL had fewer side effects.

Salford Royal Rheumatology researcher Dr Dinsdale, who is also a Research Associate at The University of Manchester, said: “While this was only a small-scale pilot study, it does suggest the potential for an alternative, less painful, treatment for telangiectases. We will continue to do all we can to find new and better treatments for patients with systemic sclerosis, which is a very serious and debilitating condition.”

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Doc Spot Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

If you have a question you would like Professor Chris Denton to answer, it to Head Office or email info@raynauds.org.uk with Doc Spot in the subject heading. Thanks!

Q: What is the cause of Raynaud’s?

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

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

A: Most patients with Raynaud's phenomenon have "primary Raynaud’s", which is not associated with any underlying disease.

Some patients do develop a related condition, such as scleroderma or another rheumatic or connective tissue disease (secondary Raynaud’s). Some cases of Raynaud’s phenomenon have positive ANA and this is associated with increased chance of developing an associated disease over subsequent years, but many patients do not develop scleroderma. Research studies suggest only about 10% of such cases progress to scleroderma.

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

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

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

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

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

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

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

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

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

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

Q: Does anyone know if there has ever been any research conducted into the use of artificial sweetners (aspartame) and Raynauds?

I just saw a comment about it causing autoimmune issues. I have used artificial sweetner most of my life and was just wondering.

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

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

A: In a condition which can be brought on by emotional stress, as well as the cold, many people have tried self-hypnosis, biofeedback techniques and acupuncture with some success. Unfortunately, there have been very few clinical trials but they do seem to show that although initially the patients claim some improvement, after about a year many patients stop the treatment because they feel no benefit or it takes up too much time.

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

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

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

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

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

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

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

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

Winter Fuel Allowance Winter Fuel Allowance is a non-means tested benefit. You only need to be a qualifying pensioner to receive it and it is paid whether you need it or not.

A petition has been set up to call on the government to extend the winter fuel allowance to anyone who suffers from conditions that are made worse by cold weather, such as Raynaud’s and scleroderma. Patricia Murray, a member of the RSA, who set up the petition is looking for 800 signatures and once these are gained she

will send the petition on to the government. At the time of going to print, only another 113 signatures were needed. If you agree that the winter fuel allowance should be extended to those with illnesses that get worse in cold weather, please sign the petition at this link: https://you.38degrees.org.uk/petitions / w i n t e r- f u e l - a l l o w a n c e - f o r- t h e disabled-and-vunerable Thank you!

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Psychological Impact of . . .

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

There is some evidence that Cognitive Behavioural Therapy is helpful in long-term conditions. So what is CBT? Cognitive behavioural therapy (CBT) is a form of talking therapy that can help you manage your problems by changing the way you think and behave. CBT cannot remove your problems but it can help you manage them in a more positive way. It encourages you to examine how your actions can affect how you think and feel. Talking and changing your behaviour can change how you think (cognitive) and what you do (behaviour). This can make you feel better about life.

When is CBT used?

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

Source: NHS Choices Getting in a SPIN SPIN is a project based in Canada but expanding across the USA and to parts of Europe. SPIN stands for Scleroderma Patientcentered Intervention Network. Over the next few years, the SPIN project plans to develop a set of psychosocial interventions, which are accessible, cost-effective and can be delivered on an on-going basis to people living with scleroderma. To make the interventions cost effective and available to everyone, the project plans to make them available online, and eventually, they will be available through patient organisations such as the RSA and Scleroderma Society. SPIN is initially concentrating on emotional distress, hand function, body image and self-management. This is a potentially important intervention that could have a positive impact on the lives of thousands. One of the problems with rare diseases such as scleroderma is that there is typically no access to psychological interventions that are relative to the specific disease. SPIN will change this. We hope that it will be possible for UK patients to sign up for SPIN as soon as possible. If you would like to sign up you will need to do this via your hospital rheumatologist. Why not ask them about SPIN and whether they are getting involved at your next appointment?

What do patients want?

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

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

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. . . Scleroderma Disfigurement can be a central part of scleroderma. This does not just affect the face but also the hands and the neck.

This change in appearance has been reported as a major cause of stress and studies have shown that, especially in women, changes in appearance have led to a significant reduction in self esteem and an increase in dissatisfaction with body image - factors which are related to both depression and anxiety.

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

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Lets talk about fatigue.

Christina Bode of the University of Twente presented international data that showed that fatigue was clearly elevated in patients with scleroderma and that it was the symptom that had the single largest impact on people living with the disease.

However, she also stated that fatigue was overlooked in many cases and suggested that this was because there were no clear causes for the fatigue and no evidence based treatments available.

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

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

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

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

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

Paul West and his chums walked the Malvern hills on a very cold November day with no tops on to raise awareness of how debilitating Raynaud’s can be. This was in memory of his mum, Christine, who sadly died with Raynaud’s and scleroderma in 2010 and for his partner Julie, who has just been diagnosed with Raynaud’s. They raised an amazing £2,189. We hope you have all managed to warm up again!

Karen Cox, for the second year in a row, ran the Clarendon half marathon in memory of her mum, who sadly passed away from scleroderma in 2012. She raised a brilliant £601.

Mary and Brian Connelly celebrated their Golden Wedding Anniversary and instead of presents they received £310 of donation for the RSA. Congratulations on your wedding anniversary!

Photo: Sussex Sport Photography

Samantha Lancaster and Jon Culshaw hosted a ten pin bowling night in memory of Ian Powell (pictured with his wife Karen).

They raised a tremendous £1,205 and were supported by the RAF College Cranwell Station.

Kirandeep Ghataorhe raised a massive £3,275 for the RSA in memory of her mother, who sadly passed away from scleroderma 20 years ago.

Carla Matthews and Karen Landles ran the Baxter’s loch Ness Marathon and raised £105 for the RSA.

Emma Finney, who was diagnosed with Raynaud’s at the tender age of 12, climbed Mount Kilamanjaro in October and raised a massive £1,444 for the RSA.

Louise Flanagan ran a Santa dash in Liverpool and raised £270

Amy Lomax ran a whopping 13 marathons in 2013, in memory of her Auntie, who had Raynaud’s. She raised a tremendous £1,097.

Thank you also to all of the following: Exeter Quilters, Janis Jackson, June Law, Den Griffen, Joshua Lochlan, Ann Wishart, Misty Vie, Sue Edser, Susan Bloomfield, Paul Barker, Peter Fuller, Peter Wright, Roy Hugman, Martin Scully, Claire McKenzie and pals Laura and Hannah, Penny Paterson, Sarah Forrester and friends Neil, Rachel and Emma, Elizabeth Roberston and her niece Jessica

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

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Contacts NURSE ADVICE LINES Royal Free, London

Sally Reddecliffe & Adele Gallimore (For Pulmonary Hypertension Enquiries)

020 7472 6354

Royal Free, London

Specialist Nurses

020 7830 2326

Bath

Sue Brown

01225 428 823

Chapel Allerton

Lynne Lister

07425 178 191

Manchester

Specialist Nurse Team

0161 206 0192

Leeds

Specialist Nurse Team

0113 3923 035

Liverpool

Jan Lamb

0151 529 3034

Newcastle Upon Tyne

Karen Walker

0191 223 1503

Belfast

Audrey Hamilton

02890 561 310

Portsmouth

Paula White & Julie Ingall

02392 286 935

Sheffield

Jayne McDermott

0114 2713 086

Brompton

Lucy Pigram

0207 352 8121

Dundee

Steve McSwiggan (Available Mon, Tues & Weds am)

01382 383 233

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

The nurses who run the advice lines also have very busy schedules and therefore it is likely you will get an answerphone message where you can leave your details for the nurse to get back to you.

MEMBER SUPPORT CONTACTS Bedfordshire Burton on Trent Bristol & Bath S. Cumbria/N. Lancs East Anglia Eastleigh Fife Lincolnshire London London, NW Manchester Merseyside North East North Yorks N. Ireland Portsmouth & S Hampshire Southport Surrey Worcestershire

Rita Boulton Helen Nutland Margaret Goff Ruth Randall Jacky Marsh Kathy Allen Rose Bevan Elenid Matthews Ruta Rackaityte Marilyn York Gill Holden Helen Lingwood Jessie Pickering Tony Overend Patience Bradley Alison Wright Nikki Whitehill Fay Collings Shirley Lynch

01767 312 544 01283 566 333 ext 5247 01454 310 225 (Members only please) 01524 904 493 peterruth@talktalk.net 01394 286 637 02380 610 678 01382 552 272 07854 219 961 07702 245 068 rcktyt@yahoo.com 01923 286 780 01942 877 259 0151 280 1194 johnandhel@sky.com 01388 527 840 01423 862 551 02890 592 370 patiencebradley@gmail.com 02392 367 960 01704 550 580 nicola.whitehill@hotmail.co.uk 01737 762 005 01386 553 392 slynch@uwclub.net

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

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

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

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

For me, Iloprost is the ‘extreme treatment’. Administered in hospital, medication is pumped through your veins over three to five days and has the effect of opening up all those little blood vessels, so in my case it helps prevent the ‘shutting down’ of my hands and feet. There is a big BUT coming…the problem is that I need three or four infusions a year and my veins are now rather ‘shot’ after all they have been through. Catheters used in venous cannulation (often called ‘Venflons’ after the flexible polymer they are manufactured from) will no longer go in easily. A peripherally inserted central catheter (PICC or PIC line) is a thin, soft, flexible tube – an intravenous (IV) line commonly used successfully for such infusions. The PIC line runs from your arm, inside your vein and into your chest cavity and, in my case, they were getting increasingly difficult to insert. Eventually, for me, insertion had to be done under local anaesthetic down in the X-ray department – all in all a most uncomfortable, difficult and frustrating experience.

The future felt bleak - my delicate veins were traumatised and damaged. Yet I was facing the prospect of Iloprost infusions regularly for the rest of my life. That could be over 250 infusions, which meant 250 PIC lines…

The prospect was daunting to say the least but when the doctor suggested using a ‘Chest Port’ I wasn’t impressed. For a start, they aren’t considered the most attractive things on the planet!

‘Google’ it and you will see the type of images I had in my head.

I’m only 25, I’m not married. My thoughts were (vain as it may be) that I’d have the thing in my chest when I got married…so I put it out of my head. Then I had the next PIC line that took nearly an hour to get in and the doctor again reminded me that a chest port (portacath) was the logical next step.

A portacath is a ‘central venous access device’ – it isn’t a shortterm fix and the port can stay in place for up to a decade. Until research develops a better way of managing my severe Raynaud’s, Iloprost is the one for me…and many other patients.

So, I told my consultant I was serious about getting the port. His

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

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

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

The next 4 days were painful for me and I felt very groggy. I understand that each person’s experience is different – one friend had said for her it looked worse than it felt but for me that was not the case. Physically, I suffered minimal bruising and swelling although my collarbone felt very painful. I knew it would heal and after a week I started to feel like myself again.

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

So, if you're reading this after being told you need a port, here are a few words of wisdom from my personal experience: 1.

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

2.

Stock up on baby wipes to keep you fresh and clean in the meantime.

3.

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

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

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

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Inspiration Alex Spark was diagnosed with generalised atrophic morphea scleroderma when she was 13.

She is now 21 and in her final year of her degree in Animation and Illustration, and hopes to become a teacher when she graduates.

She has drawn this picture, demonstrating what scleroderma means to her, and this is what her thoughts on it are: “I'm sure there are a lot of negatives with this disease but I am a positive person and I am sure a negative outlook on an image isn't going to capture people's attention.

I grabbed the colour off the Association's website so the pearl and her swimsuit are the RSA’s colour. Scleroderma to me has made me a better person. It has taught me to fight and keep going no matter how rough things get, you will always pull through. It has taught me to appreciate life and how short it is, how uncertain things can be. I look at the world and focus on the beauty and positive things life brings, because hope is the only emotion stronger than fear.

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

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

Got a hint or tip? Please let us know and we can share it to help others!

When caring for an ulcer, try taking a daily multivitamin and increase the protein in your diet to aid recovery

Helen Mason wrote this poem in 2013 called Antibodies Shmantibodies.

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

I hope you enjoy it.”

I have a wonderful head of hair Healthy; Full of shine The only bloody problem Is it’s shedding on the chair

Now we are approaching spring you might want to get outside for Turn your tights some exercise but might be inside out before putting wondering how this could them on. This means the affect your Raynaud's. seam won’t rub your toes Obviously exercise is a great which some have found thing for your health and can eases their Raynaud’s. boost circulation which can help Raynaud's. However, if you exercise intensely, then blood is drawn to the core area, and Stress releases away from the extremities adrenaline, which further which could trigger a narrows blood vessels. So if Raynaud's attack. Just you suffer from Raynaud’s, try make sure you know and avoid stressful your limits. situations!

Have you signed up to our Facebook and twitter pages to hear all that is going on? We share hints, tips, stories, articles, anything that you might like to read! You can follow us here: www.facebook.com/raynaudsandsclerodermaassociation

I’m losing all my feeling Except for where it hurts My skin is changing colour And headaches leave me reeling Stomach cramps, blurry vision Permanently tired Too hot, too cold; Acid reflux Immunities in collision My antibodies hate me They’ve amassed and gone to war Set themselves to self destruct And keep coming back for more I’ve been prodded, I’ve been poked I’ve been declared an oddity I’m still young Missy Helen Though parts of me are broked

Thank you Helen If you would like to share your personal story, art, poem or creative talents in the next edition of Hot News, please get in touch. THANK YOU!

@raynaudsuk

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Did you know?

Weekly Serving of Oily Fish 'may halve Rheumatoid Arthritis Risk' Women who eat oily fish every week may benefit from a significant reduction in their risk of developing rheumatoid arthritis, scientists have found.

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

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

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

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

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

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

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

DLA Change of Number The Department for Work and Pensions (DWP) is changing the Disability Living Allowance/Attendance Allowance (DLA/AA) Helpline telephone number. This will improve access for claimants by providing a more simple approach to contacting them.

From 29 January 2014 a new number for Attendance Allowance was introduced.

Claimants can contact the Attendance Allowance Service Centre on either 0345 605 6055 or 0845 605 6055. The new textphone number for Attendance Allowance will be 0845 604 5312. This is open Monday to Friday 8am - 6pm.

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

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

Clinical Trials If you are interested in finding out about clinical trials in the UK, the best place to look is clinicaltrials.gov All trials are obliged to register on this website and is publically available. The site can be searched to see current or recent trials that are registered in scleroderma and other relevant disorders.

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Did you know?

Have you considered including the RSA in your Will?

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

The RSA receives no government funding, so legacies are hugely important to us. Without such memorable commitment to our cause, we would not be able to fund and extend our vital research and welfare projects.

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

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

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

Are you jetting off on holiday soon?

The following travel insurance providers have been recommended by members: All Clear: 0845 250 5200 Club Direct: 0800 083 2466 Freedom Travel: 01223 446914 Free Spirit: 0845 230 5000 Insurance Choice: 0844 5577 70 It’s So Easy: 0844 357 1315 Saga Travel: 0800 015 8055 Insure and Go: 0844 888 2795 Ext 2795 Post Office: 0800 169 9999 for those aged 18 to 64 or 0800 294 2292 for those over 65 The RSA does not accept any responsibility for the recommendations. It is advisable to shop around for the best deal.

Have a lovely holiday!

RSA's founder, Anne Mawdsley MBE, retired from the charity at the end of 2013 and established 'Raynaud's & Scleroderma Support', a service which aims to give patients, carers and health professionals the benefit of her personal experience. She runs a website www.raynaudsandscleroderma.co.uk and is happy to receive emails to anne@raynaudsandscleroderma.co.uk as well as calls to 07530 810 064. We know she would love to keep in touch with friends she has made through the RSA over the years.

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

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

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

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

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

Neck side flexions: tilt the head so that the ear gets nearer to shoulder, and be sure not to be looking backwards for this stretch. You should feel a firm but comfortable stretch at the opposite side of the neck, running down towards the shoulder We would appreciate your feedback on Hot News. What did and didn’t you enjoy in this issue?

What would you like to see more of and less of? Please let us know at Head Office by phoning 01270 872 776 or emailing info@raynauds.org.uk. Thank you.

Chief Executive Elizabeth Bevins Founder Anne Mawdsley MBE President Professor Dame Carol Black DBE Vice President Professor Chris Denton Trustees Barry Hicks Joanna Kaddish Professor Jeremy Pearson Professor David Scott Executive Directors of RSA Trading Co Ltd Geoff Baggott Terry Warrener

Patrons Sharron Davies MBE Roger Jefcoate CBE DL Veronica, Lady Piercy Nick Ross David Wilkie MBE Medical Advisors Dr. M Anderson Professor J Belch Sister S Brown Professor C Denton Professor A L Herrick Dr. C Lovell Dr. R Macdonald Professor P Maddison Professor R Moots Professor A Silman Professor D Veale

Head Office 112 Crewe Road, Alsager, Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk Shop: www.rsa-shop.co.uk Charity Reg No. 326306 VAT Reg No. 159099076

Disclaimer:

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

PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION

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

Raynaud's & Scleroderma Association © Copyright 2014. All Rights Reserved.