Raynaud's Hot News Summer by DMMonline

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Hot News Issue No. 127

Volume 2 2014

In this issue...

Doc Spot Page 6

Juicing Page 10

Wie Blumen Im Glas/As Flowers In a Glass Paul Klee 1933 Watercolour and pencil on plaster primed cardboard; original frame strips 54 x 46 cm Present location unknown

Fundraisers Page 11

World Scleroderma Day is celebrated annually on the 29th June. This day was chosen as Paul Klee, a gifted Swiss artist who suffered from scleroderma, died on 29th June, 1940. The day is to celebrate the life of Paul Klee and also for those who suffer from scleroderma. Each year a painting of Paul Klee’s is chosen for World Scleroderma Day and the above, “Wie Blumen Im Glas/As Flowers In a Glass” has been chosen for 2014. Fancy a walk? Page 15

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Chief Officer Update have had a fantastic response raising £7,126 towards the charity’s work – well done everyone! Of course special thanks are due to Cumbrian Cottages for donating the holiday voucher. The Lake District and Cumbria have breathtaking views, heritage sites and wonderful food – what’s not to like? Enjoy the experience Mrs Goodman!

Elizabeth Bevins

Dear Friends and Supporters of the RSA Summer 2014 – at the time of writing – appears to be ‘Ruderals Rule’ (weeds to you and I!) in Alsager at least which is due to the deluges in June and higher temperatures that we’ve been experiencing. Thoughts of BBQs on warm summer evenings beckon but it has been ‘gloves on’ for a few weeks. It has been a busy time since the last edition of Hot News and Tracey Spray has joined the team in a ‘Communications, PR and Marketing’ role. We have been preparing for World Scleroderma Day (WSD) and the collaborative event we initiated with the Royal National Hospital for Rheumatic Diseases in Bath this year. The European theme of ‘Turning towards the Sun’ suggests hope for the future and warmth from the sun. For the first time in the UK, the Raynaud’s and Scleroderma Association and The Scleroderma Society are using FESCA funding jointly to promote WSD celebrations and our European colleagues have been supportive of our efforts. World Scleroderma Day is 29th June so there is plenty of time for members and supporters to plan what you’d like to do next year to raise awareness or fundraise! The RSA conference in Chester is Saturday 6th September this year, with a positive theme of ‘Shine On’ – looking at living with Raynaud’s and scleroderma including some break out sessions at lunchtime and an opportunity for a gentle massage. Professor Denton, our Vice President, and Professor Van Laar, Department of Rheumatology & Clinical Immunology, Utrecht, the Netherlands, are a couple of our speakers. If you haven’t already booked, do contact the office - what are you waiting for? Thank you so much to all who were able to support the 2014 Summer Prize Draw – we

A recent survey suggested that half of those who experience Raynaud’s remain undiagnosed as they don’t realise their condition is recognised medically! We continue to strive to raise awareness of Raynaud’s and scleroderma and know that Raynaud’s can be a feature of other autoimmune conditions too. Over the last few months articles have appeared in ‘That’s Life’ and ‘National Geographic’ . . . so do champion the cause if you have the opportunity and get in touch with us if you’d like some help. This summer edition of Hot News builds on the success of the spring edition (thank you for those who gave us such positive feedback). The reader’s section includes an update from Nikki Whitehill on her continued experiences with fresh juices. Nikki and I were involved in training the Arthritis Care helpline team in April when, using the wonders of modern telephone technology, she provided a ‘patient perspective’. If you feel you’d like to help the RSA in a similar way, or would like to volunteer your skills, now is the time to step forward – don’t be shy! It is always humbling to learn what others do, and why they do it, in fundraising activities for the RSA. Also in this edition is an article on antibodies by Svetlana Nihtyanova from the Royal Free Hospital, and the ever popular ‘Doc Spot’ with questions answered by Professor Denton, Professor of Experimental Rheumatology at the Royal Free Hospital and UCL Medical School in London. Did you know that the Royal Free Hospital is the largest scleroderma centre in the UK, with more than 1,400 cases of systemic sclerosis under regular review, and 4-6 new cases added a week? It has a dedicated trials unit and a multidisciplinary team. The Royal Free Hospital promotes a ‘shared care’ model with a patient’s local specialists. We have more from the Rome Congress including Dentistry (Dr Roberto Rozza, Milan) as well as Sexuality and Pregnancy (Angela Tincani, Brescia, Italy). Keen to learn more about how Raynaud’s and scleroderma impact on children and young people, I visited the team at Alder Hey, having met Clare Pane at the World Congress in February this year. Raynaud’s is relatively common; scleroderma is rare and is even less

common in children who may experience localised scleroderma and, in rare cases, systemic sclerosis. We’d like to hear from more young people about their experiences and also the parents of very young children who may have Raynaud’s or scleroderma and how we can help you further. More than a decade ago, the RSA received funding to enable a group of parents and children to experience some family weekends. Of course with social media, and the HealthUnlocked forum, communication between patients and access to knowledge is easier but should we consider a Juvenile Autoimmune Day in the future? Do let us know your views and encourage people to join us on Facebook and follow us on Twitter too. Tracey and I represented the RSA at the Family Day at the Royal Free Hospital in May for patients from the hospital. Fascinating information was shared and the programme included information on the psychological impact of scleroderma from Dr Alex Clark, an update on plastic surgery approaches for Raynaud’s phenomenon from Sophia Opel, a discussion on Stem Cell Transplant techniques in scleroderma, whilst Dr Oliver Distler talked about collaborative international work. It was an opportunity for Tracey and I as RSA representatives, to meet patients, their families, clinicians and other organisations involved in helping patients. Steve Holloway, from the Scleroderma Society, and I visited the Burton on Trent Support Group led by Helen Nutland who is one of our active local contacts. I gave a presentation to the group about our work during the past year and how we are dedicated to avoiding duplication for patients and medics alike by the charities working in partnership where we can. I also gave a presentation in North Lancashire to a group of ladies from the National Farmer’s Union who provided a very warm welcome and whose president has family experience of Raynaud’s. One of our members in the south of England, Marjorie Smallcorn, was inaugurated as Mayor of Havant in May and we are one of the charities she is kindly raising funds for in her year of office – THANK YOU MARJORIE! Read on . . . Best wishes

Elizabeth Bevins

Chief Executive Officer

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 @raynaudsuk

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News Summer Prize Draw 2014 Winners! Congratulations to the following entrants who won a prize in our 2014 Annual Raffle, which was drawn by Anne Mawdsley, MBE Cumbrian Cottage voucher Mrs Judith Goodman

Portmeirion trinket box Mrs Dorothy Stokes

Marks & Spencer vouchers Mrs K Wolfreys, Tom & Sheila Thurman, Mrs Audrey Rogers

Paintballing voucher Mrs Audrey Richards, Mr LH Baker, Mrs F Purves, J Barnes

Rembrandt, London, three course meal for two Ms Josie Ward Voucher for Mercure Hotel, Chester Mrs Judith Brearley Signed spitfire print Mr Allan Ridgeley Portmeirion cake stand Mr John Brown



Emma Bridgewater tour Mrs M Wells Microwaveable hooty owl Jane Black Asda Voucher Mrs Shirley Tandy

Thank you to everyone who entered and also those who kindly donated a prize. We raised £7,126!

‘Shine On’ Raynaud’s & Scleroderma Conference! This year our annual conference is being held in Chester on Friday 5th and Saturday 6th September at the Mercure ‘Abbots Well’ Hotel. This year’s theme ‘SHINE ON’ is a warm, spotlight approach to share information, and give people the chance to get together from all over the country, to learn the latest news about their conditions, experience ways of better managing their treatments and hopefully enjoy themselves. Our annual conference is a gathering of all our supporters and we welcome anyone who is interested in Raynaud’s and scleroderma, their families and carers to join us for this special day. For those of you who are able to join us for the Friday we shall be having an informal meal and some light entertainment. On Saturday the conference starts at 9:30am and we have a packed day of speakers and presentations with a large breakout session at lunchtime for you to experience ‘healthcare activities’ and ‘one to ones’. Tracey Spray, the newest member of the RSA who is responsible for organising this year’s big event, said, ‘We want people to leave feeling uplifted, enlightened and having made new friends, as well as feeling happier about managing their condition, knowing there is support in every direction’. With internationally renowned speakers on the subject of Raynaud’s and scleroderma, we have Professor Jaap Van Lar talking about the latest stem cell research trial and Professor Chris Denton will be giving us an update on the conditions. There will be engaging talks throughout the day including the role of your specialist nurse and presentations on footcare, digital ulcers, skincare, pain management and exercise, from a wealth of clinically experienced doctors, clinical specialist nurses and other healthcare practitioners. The lunchtime sessions will be longer this year allowing delegates to interact with various aspects such as massage with Keith Hunt, camouflage make up from Changing Faces and a range of practical therapy sessions from occupational therapists, physiotherapists and dieticians. We do hope you will be able to join us this year. To read more about the day and for a full programme of events, please visit www.raynauds.org.uk/shineonconference or contact Tracey Spray for more information: tracey@raynauds.org.uk or 01270 872776 9am - 5pm.

HealthUnlocked We recently moved our HealthUnlocked page to https://healthunlocked.com/raynauds-uk If you still have our old page bookmarked, don't worry as there is a link to our new page at the top of our old one. If you haven't visited this page already, why not do so? It is the RSA's online community with over 2,300 members. Since everybody's experience of Raynaud's and/or scleroderma is different, sharing your experiences can be useful. Through blogs and questions you can connect with others who have Raynaud's & scleroderma and find support from those who understand the conditions.

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Rome 3rd Systemic Sclerosis World Congress Rome, Italy February 2014 As you will have read in the previous volume of Hot News, Rome became the focus of the scleroderma world for a few days in February this year due to the 3rd Systemic Sclerosis World Conference being held there. We wanted to share more information about the congress in the previous edition however, were constrained due to a lack of space in the packed issue! We are delighted to be able to share the following information from different aspects of the conference in more depth. Dentistry in Systemic Sclerosis by Dr. Roberto Rozza, National President of SIOH and Head of the Disabled Dentistry Department, University of Milan and San Paolo Hospital, Milan, Italy Systemic Sclerosis (SSc) can have a significant adverse effect upon the health of the mouth and subsequently can cause a lot of oral problems. A wide variety of different problems can arise that may result in increased liability to dental decay (caries), gingivitis and difficulty with dentures. Furthermore, these oral problems, in particular xerostomia (mouth dryness) and microstomia (limited mouth opening), can detrimentally affect the quality of life of individuals. A patient’s mouth might not be able to open easily and it becomes harder for a dentist to examine the teeth. Even basic oral hygiene procedures might become difficult. What can you do to help with this? It is vital to get regular check-ups and oral hygiene sessions. Acidic foods and sugar should be avoided. Alcohol free mouth rinses and enzyme based gels/toothpastes can help, as can rinsing in saline solutions, a frequent consumption of water and chewing sugar free gum. It is important to assess the need for dental treatment shortly after receiving the diagnosis of SSc. Sexuality and pregnancy in Systemic Sclerosis by Angela Tincani from the Rheumatology Unit in Spedali Civili & University of Brescia, Italy Sexual activity appears to be reduced in men and women with SSc. This is because various aspects of the disease (eg skin thickening) can help to elevate image dissatisfaction, with consequent difficulties in social and sexual relationships. Among the women with SSc who are sexually active, vaginal dryness and pain during intercourse are much more frequent than in the general population. In contrast to those with Raynaud’s, a higher

number of SSc patients have never had a pregnancy. Research has shown that in the majority of cases, SSc is stable during pregnancy. IMPRESS 2 is an international multi-centric prospective study on pregnancy in systemic sclerosis that is currently underway. 45 centres worldwide are taking part. Mothers with SSc report difficulty with parenting, which can be related to the severity of the symptoms. Interventions to reduce pain and fatigue may improve perceived parenting ability. How does SSc affect men? It was believed erectile dysfunction is frequent in SSc, however, in a recent survey only 17.7% of men suffered with it and it was found to be associated with older age, alcohol consumption and severe disease. Only 23% of those suffering from it are treated. In systemic sclerosis, the male/female ration is 1/3, but in the 15 to 50 years old category, it is 1/15. Why is breathing so difficult? Oliver Distler, an attending physician from the division of Rheumatology in the University Hospital of Zurich, Switzerland, talked about the difficulties in breathing experienced by many scleroderma patients. He explained how breathing works and said that elastic skin is vital to this, as it allows for the lung’s expansion during breathing. Many scleroderma patients experience lung fibrosis and/or pulmonary hypertension. Lung fibrosis occurs in 35% of patients with limited systemic sclerosis and in 53% of those with diffuse SSc. Breathing problems are multi-factorial with many possible reasons why it occurs, including skin tightening and impaired gas transfer. The goal is for early detection and early treatment. It is also important to have an annual lung screening. Scleroderma and Gastro-oesophageal complications: What can I do to help digestion? Janet Pope MD MPH FRCPC, a professor of Medicine at the Schulich School of Medicine & Dentistry at the University of Western Ontario, gave a talk on scleroderma and Gastro-oesophageal complications. 90% of those with scleroderma have gastrointestinal involvement and it can affect any area of the gastrointestinal tract, including the mouth, stomach and bowel. The most common problems are acid reflux,

swallowing difficulties and slow emptying of the stomach. Many symptoms such as heartburn, food sticking, feeling full early and bloating with diarrhoea are treatable. Medications include proton pump inhibitors, pro-kinetic drugs and antibiotics. It is important to manage gastrointestinal problems effectively to help minimise the potential impact of acid reflux on lung disease. Frequent dental care is important too. To help minimise reflux, take prescribed medication, raise the head of your bed and avoid any triggers that you find make things worse. Improving nutrition and taking probiotics can help. Faecal incontinence can be improved by sacral nerve stimulation and pelvic floor exercises, regulating the bowels to avoid diarrhoea and constipation. Why did I get scleroderma and will I be cured? Jaap van Laar; Professor and Chair of the Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, the Netherlands, discussed scleroderma and its cause. He explained that scleroderma is an autoimmune disease where the immune system has gone awry. The ‘normal’ immune system protects the body from potentially harmful substances. The inflammatory response (inflammation) is part of the immune response, occurring when tissues are injured by bacteria, viruses, trauma, toxins or other causes. Genetic risk factors play a part in developing scleroderma but that is not the whole story. Being female, exposure to certain chemicals and solvents, and silica dust (not the same as silicone!) seem to play a role. The severity of scleroderma tends to increase if the patient is male, a smoker and of more advanced years. Today, early effective treatment for scleroderma improves the outcome. The experts believe they are getting closer to finding the cause, particularly with greater international collaboration and internetbased communication for patients, scientists and doctors, which spreads news rapidly!

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World Scleroderma Day To celebrate World Scleroderma Day (WSD), 29th June, the theme 'Turning Towards the Sun' embraces art and creativity. The image on the front cover is by Paul Klee and this has been used as inspiration for both those suffering with scleroderma and clinical staff to ‘do something’ for the day to raise awareness of scleroderma. If you arranged or attended an event for WSD please get in touch to share your activity and please continue to spread awareness of scleroderma through engaging, exciting or educating events.

The Patient’s Day - Thursday 3rd July, Bath A World Scleroderma Day Celebration for 2014 was held at The Royal National Hospital for Rheumatic Diseases, Bath, on 3rd July with the help of Dr. John Pauling, Consultant Rheumatologist.

To mark this The Scleroderma Society and the Raynaud’s & Scleroderma Association jointly organized an educational event to raise awareness and help people understand more about the condition.

Paula White and her team at Portsmouth Hospital NHS Trust have been working closely with their patients and other healthcare professionals and support groups to develop Individual Personal Care Plans for a variety of rheumatological diseases. They proudly launched the Personal Care Plan for Scleroderma on 25th June in conjunction with World Scleroderma Day.

The morning session was attended by 45 people with scleroderma and/ or Raynaud’s phenomenon and associated conditions, along with family and friends. Talks were given by Dr. John Pauling on the link between scleroderma & Raynaud’s, from Dr. Victoria Flower, Specialist Registrar, on current and future treatment options for scleroderma and Consultant Specialist Nurse Sue Brown talked about self-management of the condition and how best to handle it by ‘Listening to your body!’. Attendees enjoyed the opportunity to ask questions throughout the presentations and meet the team at Bath, over a buffet lunch. In the afternoon there was a series of clinical sessions. The first from dietician Julie Frank provided information on eating techniques whilst getting the benefits from eating little and often. Jayne Masters, a physiotherapist, and Lisa Small, an occupational therapist, talked through physiotherapy exercise, the boom and bust theory, general wellbeing

The meeting was attended by patients, their family and friends (24 in total). They have been supported by Raynaud's and Scleroderma Association and also The Scleroderma Society. Paula White explains, "Individuals living with long term conditions spend approximately 3 hours every year with healthcare professionals, for the other 8,757 hours they look after themselves. Personal Care Plans are written records that the patient takes ownership of and can be used in partnership with healthcare professionals to plan and record care. This document can also help

Martin Ealham has scleroderma and for WSD, as well as to raise awareness of the disease, he is walking 90 miles of Hadrian’s Wall in just 5 days. Martin has had much success in his fundraising already, with a £250 donation from Lord Bamford’s Charity which is special because Martin has worked for JCB for the last 18 years. He has received great encouragement from The Burton Support Group, his work colleagues, friends and other businesses have donated goods, clothing and money in support of the venture. To read more about Martin’s Hadrian’s Wall challenge please go to his JustGiving page which can be found here www.justgiving/sclerodermawalk and if possible please support Martin in his plight.

practices when suffering with fatigue and other coping strategies. “The sessions were very informative and explained in a way which was very understandable” said one of the delegates. NHS Trust, a view of pulmonary arterial hypertension and other clinical features from Dr. Gerry Coghlan, from The Royal Free Hospital London, and a synopsis on practical management of Raynaud’s and systemic sclerosis by our host, Dr. John Pauling. Dr. John Pauling said, ‘We are delighted to be hosting this event for our patients and clinicians whilst sharing our knowledge of the diseases. We had some fantastic speakers and presentations sharing issues and successes within this field and everyone who attended seemed to find it engaging and worthwhile and it was a pleasure to host this exciting event here at The Royal National Hospital for Rheumatic Diseases and we would very much like to do it again in 2015’.

support patients to self manage and prompt them when to seek advice.” The feedback from the pilot study of the Scleroderma Personal Care Plan was positive and all those that attended said that they would continue to use their care plan in the future. The hope is that this ‘pilot’ will be rolled out to other hospitals so patients, families and carers can benefit from the hard work put in at Portsmouth, so ask your local hospital for details to see if it is something that can be ignited in your area.

The team at Salford Royal wore blue, as part of The Scleroderma Society’s WSD celebrations.

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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, send it to Head Office or email info@raynauds.org.uk with Doc Spot in the subject heading. Thanks!

Q: I am lactose intolerant and was wondering what are the alternatives to medication in tablet/capsule form? Are they readily available? A: You should discuss this with your pharmacist as there are generally forms of most common medication that do not contain lactose including tablet, capsule and liquid forms in many cases. Q: Does scleroderma always show up in blood tests or will scans reveal it? My scleroderma took a long time to diagnose and showed up in scans. A: Since scleroderma is uncommon and can be very different in pattern or extent, sometimes with only mild skin changes, it is not unusual for diagnosis to take some time, especially in milder or atypical cases. Many doctors only see a very few scleroderma cases in their clinic and naturally focus first on more common diagnoses. Eventually most (more than 90%) patients have abnormal blood tests, especially anti-nuclear antibodies (ANA) but these may take time to develop. Q: I have itchy skin and E45 Itch Relief cream hasn't worked. Do you have any other recommendations? There are some products listed in the Scleroderma Society's leaflet on skin. I don't know when the info was put together and I wonder if there might be some newer products now? A: Itching is a common feature of scleroderma skin disease, and may be especially troublesome in early stage diffuse forms of the disease. Treatment with creams can be helpful, such as simple and soothing methol containing preparations, emulsifying creams such as E45 (and others) or tablet therapies. Antihistamines sometimes help and other drugs can be tried – some of the immune suppressive drugs may be helpful when given for scleroderma. Generally itching becomes less severe later in the course of diffuse scleroderma as it moves into a more stable stage of this disease. Q: I have heard of the alleged benefits of Nitric Oxide to help blood flow to all the body's organs and the transportation of oxygen to the body's tissues and have read that ProArgi9-Plus is the "ultimate vasodilator". Is this another supplement money-making mechanism or can it be useful for people with Raynaud's and scleroderma? If it is beneficial would there be any difficulties if taken with prescribed medication? A: Nitric oxide (NO) is a very important substance made by the lining cells of blood vessels that can improve blood flow and there is evidence that NO activity is reduced in Raynaud’s phenomenon and some complications of scleroderma such as pulmonary hypertension (high blood pressure in the lungs). Some drugs such as sildenafil work by enhancing the action of NO. The body makes NO from arginine and so, in theory, taking more in the diet might be helpful but it has not been proven and it may be that levels in supplements are not high enough to help. Like many supplements these could be tried and are unlikely to cause harm but cannot be recommended in the absence of clear evidence of benefit that would require a formal clinical trial. Q: What is an autoantibody? Which ones are involved in scleroderma? Are they involved in Raynaud’s? A: All healthy people have antibodies in their blood that help to prevent or fight infection. The antibodies are produced by cells of the immune system. In autoimmune disease the body develops antibodies that can bind to a patient’s own cells and these are called autoantibodies. They may sometimes cause damage and contribute to disease but more often are just markers of the abnormal immune system that is part of a condition such as scleroderma. In scleroderma there are specific patterns of antinuclear autoantibodies (called ANAs) that target very specific proteins. Most scleroderma patients have one of these ANAs but different patterns or subtypes of scleroderma may have distinct ANA patterns and this helps doctors in the clinic. Q: I have Raynaud's but nothing specific to scleroderma although I have other autoantibodies suggesting other auto immune 'activity'. Will I develop scleroderma and what is the connection between Raynaud's and other autoimmune conditions? A: Some patients with Raynaud’s phenomenon have a positive ANA blood test and this can increase the risk of developing a connective tissue disease. This might be lupus (SLE), mixed connective tissue disease (MCTD) or sometimes scleroderma. In general if there are no clinical signs or symptoms of scleroderma it is sufficient just to keep these tests under review and have a clinical assessment from time to time, such as every year. Overall only around 10-15% of such cases ever show progression to a connective tissue disease. The risk is somewhat higher if nail fold capillaroscopy is also abnormal and your doctor may suggest this test is performed. Q: Can Raynaud's affect glaucoma or vice versa? A: There is no direct link between Raynaud’s phenomenon and glaucoma but the conditions could be linked indirectly. First, some treatments for glaucoma include eye drops that have drugs called beta blockers in them. These lower the pressure in the eyes that causes glaucoma but can trigger or worsen Raynaud’s if the drugs are absorbed into the circulation. Conversely, steroids can be used to treat connective tissue disease that can be associated with Raynaud’s and can elevate the pressure in the back of the eye sometimes.

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Doc Spot Q: What is the link between oestrogen and Raynaud's? What sort of research has been conducted into hormones and their connection with Raynaud's? A: Raynaud’s phenomenon is much more common in women than men and this does raise the possibility that sex hormones such as oestrogen might be relevant. It is known that oestrogen alters blood vessel function and this may explain why women generally have lower rates of heart disease than men, at least until the menopause. However, this is only one possible explanation as many autoimmune diseases are more common in women and hormones may be just part of the reason. Research into differences between male and female Raynaud’s and scleroderma has been undertaken but no firm conclusions about the role of oestrogen have yet been reached. Q: Can the contraceptive pill, contraceptive implant or injection have an impact on Raynaud’s? It has been suggested that my Raynaud’s may have been caused by taking the pill and I wonder about the association with hormonal contraception. A: As discussed above, female hormones can affect blood vessels and it is often observed that Raynaud’s severity improves in pregnancy when hormone levels are more stable and generally oestrogen levels higher. Although contraceptives that alter oestrogen or progestogen levels may impact on Raynaud’s this is not always the case. If Raynaud’s develops or clearly worsens within a few weeks of starting or changing a hormonal contraceptive this is a good clue that stopping or changing this may be worthwhile. Q: I was diagnosed with primary Raynaud's about 10 years ago which affects my hands and feet only, particularly when exposed to sudden change in temperature. I gave birth to a child 10 months ago and a few months after birth I developed a very extended hair loss (alopecia areata) currently limited to the scalp only. I have consulted a dermatologist who told me that alopecia areata is often caused by an autoimmune condition. Do you know if there is any relation between Raynaud's and hair loss? A: Primary Raynaud’s is very common, affecting up to 10% of otherwise healthy women and so any association with other medical conditions may be coinicidence. Alopecia areata is an autoimmune condition and it is not uncommon for autoimmune conditions to develop or worsen a few months after pregnancy. This may reflect the natural immune suppression that occurs during pregnancy that regresses a few months later and so there might be more chance of autoimmunity developing at that time. There is no direct relationship between Raynaud’s and hair loss although some conditions such as lupus can cause both symptoms. If you are concerned then this should be discussed with your doctors in case any further tests are necessary. Q: If a man is taking scleroderma medication and fathers a child can it affect the foetus? Can a predisposition to scleroderma be detected in a child early in life if one of its parents has it? A: It is important to check with your doctor or pharmacist if you are taking any prescribed medication and wish to start a family – whether you are male or female. In general drugs that affect the immune system such as methotrexate or mycophenolate must be avoided – for men it is recommended to discontinue such drugs at least 3 months before trying to start a family. Scleroderma is generally not passed on in families and it would not be possible to determine a predisposition in a child – Raynaud’s or abnormal blood tests related to scleroderma are sometimes seen in adults that are relatives of scleroderma patients but this does not mean they will develop scleroderma, it likely reflects the complex genetic factors relevant to the disease.

What is Telangiectasia? appearance can vary from large pronounced red dots to very small dots. More of a spidery broken vessel look may be what some experience. The specific reason this happens is not yet known but scleroderma specialists view this as another aspect of vascular damage caused by scleroderma. The spots when pressed will disappear only to reappear once the pressure is released. They are flat and smooth on the skin with no evidence of a raised spot or rash. Denise, a blogger from Michigan USA, explains: “Telangiectasia (pictured above) are capillaries that have become dilated or enlarged, which makes them visible on the surface of the skin. Their

Telangiectasia is the T in the acronym of CREST Syndrome. However, people with diffuse scleroderma can also get Telangiectasia. Telangiectasia spots

seem to more commonly appear on areas of the body which are exposed to the sun. Therefore it has been stated by physicians that using a sunscreen of SPF 15 or greater is typically recommended. There are no proven preventative measure and efforts to remove the spots by laser are not always successful. Many people choose cover-up cosmetics such as a concealer or a foundation make-up as an alternative to the costly procedure of laser which doesn't appear to bring long-term results.”

Published in the Scleroderma News Feb 2014 Edition. Editor: Hollie Thorman.

Read more of Denise’s blog: : http://sclerodermasupport.blogspot.co.uk

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Understanding Autoantibodies By Dr Svetlana Nihtyanova and Professor Chris Denton on behalf of the Royal Free London NHS Foundation Trust What are autoantibodies? Antibodies are Y-shaped proteins, produced by a type of blood cell, called lymphocytes. They are a very important part of the immune system and their role is to attach themselves to foreign bodies, for example viruses or bacteria, as part of the normal immune response. When an antibody is directed against structures in the human body, they are called autoantibodies and when those structures are part of the cell nucleus (the part of the cell that contains the genetic material), they are called anti-nuclear antibodies (ANA), pictured right.

Anti-centromere antibody (called ACA) is the most frequently seen antibody among SSc patients. It is highly specific – around 99% all ACA positive patients develop SSc. ACA positivity is strongly associated with the limited cutaneous subset of SSc. Patients who carry ACA are relatively protected from pulmonary fibrosis (scarring of the lungs) and scleroderma renal crisis. Although it was previously thought to associate with pulmonary hypertension (raised blood pressure in the lung arteries), recent studies show no such association in unselected SSc cohorts.

An anti-nuclear autoantibody

Although many autoimmune conditions are associated with autoantibodies, it is still unclear whether autoantibodies cause scleroderma (systemic sclerosis; SSc) or are simply a by-product of the disease that can be used as a laboratory marker to help with diagnosis and subgrouping. Recent research suggests that some of the SSc-associated antibodies have a more active role in the disease development.

What is their significance in scleroderma? Patients with SSc can carry a number of different autoantibodies. Nevertheless, there are three types of ANA that are highly SScspecific (almost exclusively found in SSc), which are found in over 50% of patients with the disease. These include anticentromere antibodies (ACA), anti-topoisomerase I antibodies (anti-Scl 70 antibodies, ATA) and anti-RNA polymerase III antibodies (ARA). They are generally mutually exclusive, although a small proportion of SSc patients can be positive for both ACA and ATA. Some people with scleroderma may not carry any autoantibodies. The type of autoantibody a patient has generally does not change over time. On the other hand, antibody levels can vary but their association with disease course and outcome is still unclear. For that reason, it is normally sufficient to test autoantibodies in SSc patients just once.

How do antibodies help with diagnosis and subgrouping? Autoantibody type is often associated with one of the two disease subsets of SSc – the type of scleroderma, defined by the extent of skin involvement. In patients with diffuse cutaneous systemic sclerosis (dcSSc), skin is thickened and tight all over the body, while in limited cutaneous systemic sclerosis (lcSSc), only the skin over the hands, forearms, feet, lower legs and face is affected. Although autoantibodies associate with organ complications, not all patients who carry a certain type of antibody will develop organ problems. Below, we present a review of the SSc-associated antibodies and their clinical associations.

Anti-Scl 70 antibody (called ATA) is another antibody which has very high specificity for SSc. Both SSc subsets can be seen in ATA positive patients. ATA is a strong predictor for development of pulmonary fibrosis and finger ulcers. The majority of patients who carry anti-RNA polymerase antibodies (called ARA) have the diffuse cutaneous subset of SSc. It is one of the strongest predictors of scleroderma renal crisis and about 4 out of 10 ARA positive subjects develop renal crisis. Other, rarer antibodies, which are specific for SSc, include anti-Th/To antibodies, (which associate with limited disease, pulmonary fibrosis and pulmonary hypertension) and anti-U3RNP antibodies, which associate with generally severe disease and different organ problems. There are also autoantibodies that associate with scleroderma overlap syndromes – conditions where patients have features of more than one connective tissue disease. Of those more common are anti-PmScl antibodies, which associate with SSc and myositis (inflammation of the muscles) and anti-nRNP antibodies, which associate with overlap features of SSc, lupus, rheumatoid arthritis and myositis.

Take home messages The new SSc criteria that were finalised in 2013, takes account of the presence a hallmark SSc-specific antibody (ACA, ATA and ARA). Together with the findings of capillaroscopy, (a test using a microscope to look at the size and shape of nailfold capillaries) antibodies are very helpful for the early diagnosis of scleroderma and may predict future development of the disease. They also help recognise patients at risk of specific organ problems, which makes them an essential part of the initial assessment of every patient. Although they associate strongly with clinical features, antibodies are not 100% sensitive or specific for a given SSc complication. For that reason, regular internal organ tests are performed on every SSc patient.

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Twins Story - scleroderma An Emotional and Physical Journey Julie and Pauline’s story is unique in that they are twins who were both diagnosed in their 50s with the autoimmune disease, scleroderma. This amazing journey towards diagnosis, although vastly different from each other, not only highlights the emotional impact of their disease on them individually but their united determination in increasing public awareness of such a debilitating disease, if left untreated.

"I feel so lucky in a sense that Julie was diagnosed before me, as she could see I was heading down the same path as her, yet I was in denial. Surely I couldn't have the same disease as my twin, not to mention a disease that hardly anyone knew anything about." said Pauline. "I only had the blood tests to keep Julie quiet. I am so thankful now that I did and that Julie persisted. Having an early diagnosis has meant that although I have similar symptoms, the severity is less than Julie's," says Pauline.

Julie and Pauline were from a large family of 5 children born in Quorn, Australia. They grew up happily in a country town until their father passed away suddenly when the girls were only 5 years old. This then left their mother raising five children under 8 years old alone. The family moved to Seacombe Gardens where they had wonderful support from extended family and the children grew up in the suburbs of Adelaide, having a typical fun loving and healthy childhood. Both Julie and Pauline went on to have successful and rewarding careers. Pauline’s career as a Physical Education teacher took her to Singapore for 20 years. Julie’s focus led her towards nursing and to Harvey Bay, Queensland.

Once Pauline was diagnosed with the extractable nuclear antigen (ENA) with the presence of scleroderma antibody and antinuclear antibodies (ANA) detected, Julie decided to move back to Adelaide to support Pauline and be nearer to her extended family. Pauline was diagnosed very early in her condition and the medicine she takes slowed down the progress of her disease.

It wasn’t until 2006 and after several years of painful hands and feelings of tiredness and emotional exhaustion from constantly being told that her pain was associated with a previous carpal tunnel operation in 2002, that Julie was eventually diagnosed with scleroderma. “Finally I had an answer to my problems” said Julie. “I was almost excited that I finally knew what was causing me such pain and emotional distress for the past few years.” Once diagnosed, Julie was referred to the Scleroderma Clinic in the Prince Charles Hospital in Brisbane which then provided Julie with incredible support and resources to assist her in managing her condition. "I can't stress enough how important it is to have a good specialist and support network" says Julie. "Up until I was diagnosed, I felt very isolated in my pain, the impacts have been huge and not just emotionally but also physically. There are limitations to what I can now do." Having been a nurse for over 40 years, Julie can no longer work in the profession she loved. Pauline's diagnosis in 2011 was in part due to her youngest daughter, a doctor, noticing swelling in her hands. She recalls her husband buying her new rings as her fingers were so swollen, she could no longer wear them. Julie had suspected that perhaps Pauline's symptoms were more than what they seemed and had repeatedly asked her sister to be tested for scleroderma. Pauline also developed a severe cough and, not realising that other organs can be affected by scleroderma such as lungs, was initially treated for asthma.

The twins share some similarities with their scleroderma. Both Julie and Pauline's skin is incredibly hard and thickening, particularly on the fingers. They describe their body to touch and the sensation they feel is like touching or wearing a cold wet-suit. Winter is incredibly difficult for them both as scleroderma typically leads to stiffness and difficulties in moving the joints because the cold exacerbates this. Both sisters talk about winter as being a time of hibernation. The impact of scleroderma on them however is very different. Julie's hands feel like they have just come out of the freezer to touch. She also has had ulcers on her fingers and there is noticeable tightening of her skin around her mouth, making trips to the dentist a real challenge. Julie also has regular stretching of her oesophagus under a general anaesthetic and takes a large number of medicines that are very expensive. Pauline has the tiredness and hard skin that Julie has, but with the treatment and support she receives, leads a very active and fulfilling life. Both Julie and Pauline wonder how many people go undiagnosed and treatment is delayed and then faced with deteriorating health with no answer to their problems. It is the closeness and the bond that the twins share that keeps them looking forward when they feel overwhelmed with their disease. "In a way, it makes it easier to share your thoughts and feelings with someone and I guess we are, in a sense, incredibly lucky to have each other" says Pauline. "It is also why support networks are vital in helping those who are living with scleroderma and other auto-immune diseases to access support as well as current and reliable information."

Thank you to our friends at the Scleroderma Association of NSW for sharing this article. It was featured in Newsletter No 188 November 2013 pp7-8, which was reprinted with permission from Arthritis SA, Spring Issue, 2013, pp.15-16). If you feel ‘closed off’ and would like to contact someone or join a network in your area, either contact us here at the RSA so we can put you in touch with someone or please see our local member support contacts on page 14 for a listening ear in your area.

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Juicing Nikki Whitehill shared her positive experience of the benefits of fresh juices in Hot News at the beginning of 2013. We wanted to share with you an update of how Nikki is doing with her juice diet. The following is Nikki’s updated personal story . . .

Further to my ‘juicing epiphany’ being printed at the beginning of last year, here is an update as to my progress. It is now 15 months since I started on my juicing routine and changing my diet to raw fruits and vegetables, and I feel so much better! I am not yet diagnosis free but I certainly feel back on the path to well being.

Having lived with diffuse systemic sclerosis and Raynaud’s diagnosis since 1997, along with years of immunosuppressants, steroids and antibiotics, my GI system had almost gone into lock down, accompanied with the constant lethargy and tiredness, my body felt so heavy and clothes had to be baggy and loose, prompting a juicer purchase as a last resort. I noticed a difference within the first few days of drinking the vitamin packed fresh juices, which I documented in my last article. I am now delighted to share the amazing results over the last 18 months, which I have had by being mindful to my diet and the extra nutrition requirements demanded by the disease. I have decreased my acid attacks by avoiding certain trigger foods as well as reducing my constant bloated feeling by cutting out starch (bread, pasta, rice, potatoes), caffeine, milk, alcohol and meat. At first changing my dietary habits was quite difficult, but the desire to feel better kept me going. I still indulge in a few ‘naughty’ treats, as I cannot imagine a life without cake, but all in all

I am more disciplined with the food I am putting into my body and can see and feel the results on a daily basis. I feel brighter as well as lighter and little tasks are not as daunting as they used to be. My constant desire to ‘feel good’ again spurs me on with my dedicated daily routine for well being. A typical day for me is: juice of squeezed half lemon with warm boiled water to start. I then go and indulge in my mermaid duties to moisturise my skin, warm my joints and kick start my circulation. I will then have a bowl of unsweetened muesli with almond milk and half a banana. At lunchtime I will juice ¼ grapefruit, 1 orange, 1 inch thick slice of pineapple and strawberries or blueberries, and then mix this juice with ½ banana and organic natural yoghurt to make a smoothie. I use the yoghurt to neutralise the acid from the vitamin C packed juice as well as to control the internal candida, which is caused by years of antibiotic consumption. Mid afternoon I will juice pineapple, 2 golden delicious apples (they are the juiciest), cucumber, ½ lime, and then mix this juice with 1 teaspoon of spirulina, 1 teaspoon of wheatgrass and a probiotic capsule. Then later on for my evening meal I will have salmon or a vegetarian option with steamed vegetables or a fresh salad including avocado a few times a week. Not only have I noticed a welcome increase in my energy, but an improvement in my skin elasticity and an improvement in my pain management. I was hoping to be at the world congress in Rome, but unfortunately my Raynaud’s symptoms remain a challenge, and so I had to stay at home in my eskimo outfit! I hope my experience can help anyone else who may be feeling as I did, before turning my kitchen into a mini pharmacy. I have written my personal experience survival guide where I include in more detail as to my day-to-day routine. This can be found on my blog at cosmicfairy444.blogspot.co.uk

Comment from the RSA: Healthy Lifestyle choices and good nutrition continue to be important in combatting the symptoms of disease and this is particularly important in conditions such as scleroderma where the gut function may be compromised. Hope it continues to go well for you Nikki… 10

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

Tony Forrest ran the London Marathon in April and raised a tremendous £3,419.83. His employers, Towers Watson, also kindly donated £1,480. Thank you!

Steven Byers ran the Manchester 10k in memory of his mum, Christine. He raised a brilliant £1,015. Thanks Steven.

Nick Rouse ran the Milton Keynes Marathon in memory of his Aunty Sheila and raised a wonderful £1,313. Thanks Nick.

The Audley Male Voice Choir held a concert and raised £1,000 for the RSA. Thank you to all singers!

Lynn Ford staged a musical evening at Fairkites Hall, Hornchurch, Essex. The evening raised £98. Thank you to everyone who took part.

Thank you also to all of the following:

Photo: Sussex Sport Photography

Thanks to Debbie Pentland who continues to fundraise on our behalf by holding Tai Chi classes.

John Lynch and the Worcester Group for holding a Mayor’s coffee morning Jill Hargraves who ran the Manchester 10k Dorothy Scott and the Craft Group in Northern Ireland Janet Guiel and her husband who celebrated their Golden wedding anniversary and asked for donations to the RSA in lieu of presents Anne Wishart’s husband Iain who gives talks on different topics Poppy Hughes who cut off her ponytail Team Rean who had a month of abstinence of all treats in January Preston and district NFU Ladies social section Will Gregory who ran the Manchester 10k Brenda Holden’s friend who knits for charity Newcastle Pet Supplies who collected £250 in their Percy Box

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. 11

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Scleroderma in Childhood What is it? ‘Scleroderma’ literally means ‘hard skin’. It is an autoimmune condition which affects the skin and underlying tissues. It is a rare childhood disease, with just under 200 children each year being newly diagnosed in the UK. There are two main types of scleroderma: localised (also known as morphea, meaning patches) and systemic scleroderma (or systemic sclerosis). Most children are affected by localised scleroderma and often in certain patterns. For example, it can involve an arm, leg or face in a band or line.

How is scleroderma different in children? Because children are growing, scleroderma can have a huge impact. The tight scar tissue can stop an arm or leg growing properly or prevent a joint moving freely. Scleroderma affecting the face can affect the growth of the face leading to permanent changes. Children may also have eye, teeth, brain or jaw involvement that needs to be carefully looked for. Children with systemic sclerosis more commonly have arthritis or muscle inflammation compared to adults.

How is it diagnosed and treated? Childhood scleroderma is a rare condition and because of this many children experience a delay in diagnosis. It is important that children are seen in a timely manner by specialists who have expertise in looking after children with scleroderma. In the UK, this is often done by a paediatric rheumatologist or paediatric dermatologist, sometimes in a joint clinic. Because of the impact of the disease in children who are growing, the aim is to start treatment early and medicines such as steroids and methotrexate are used to switch off inflammation in the skin and tissues. The input of specialist nurses who can educate the family on the condition and drugs used is vital, as is input from specialist physiotherapists and occupational therapists.

What is the impact on families and children? Depending on the area affected, scleroderma can have varying impact on families and children. Scleroderma may affect a child’s ability to do physical activities such as sports, dance and general playground games or even everyday movements (e.g. sitting down/standing up or putting on socks and shoes). Children with scleroderma have input from many specialists and many types of therapy and tests to help manage their condition but this can mean many hospital visits and many hours off school. Some children have to deal with pain, taking medication, exercises and stiffness. They may also have to deal with side effects of medications such as moodiness and putting on weight with steroids. This is at a time when they are already going through significant developmental changes. At school they may be aware of other children pointing at their skin marks or asking them why they are not joining in, which can sometimes be frustrating and difficult for them. The input of a clinical psychologist is helpful for some families and children.

What research is occurring in childhood scleroderma? It is important that studies are done to assess treatments for scleroderma in children as well as improving understanding of this disease. Because childhood scleroderma is rare, such research needs to be done across many specialist centres and often within different countries. Within the UK, Dr Clare Pain is chair of the childhood scleroderma topic specific group which includes interested doctors, physiotherapists and a parent representative. This group aims to help facilitate studies to improve care of children with this condition including linking to experts in other countries. For example, an international study examining how systemic sclerosis affects children, has recently been established at most specialist centres in the UK. We very much value input from children, young people and parents who have experience of this disease so that we can develop studies that answer the issues that concern you. We are hoping that a future project in conjunction with the Raynaud’s and Scleroderma Association and its members can make sure we hear your opinions and ideas. Photo showing child with localised scleroderma affecting her leg and buttock showing poor growth of the leg with thickening of tissues, and some loss of tissue around ankle. Left leg is generally smaller and shorter than right with poor movement of the foot and ankle.

Photo showing the same child after a successful leg lengthening procedure.

Child with features of systemic sclerosis together with arthritis of the finger joints and inflammatory rashes on the knuckles. Her fingers were unable to bend fully because of arthritis and also skin thickening.

Written by: Dr Clare Pain, Consultant Paediatric Rheumatologist at Alder Hey Children’s NHS Foundation Trust and Chair of the Childhood Scleroderma Topic Specific Group Anne Meredith, Parent Representative on Childhood Scleroderma Topic Specific Group Dr Sunil Sampath, Paediatric Rheumatology Trainee at Alder Hey

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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 Ext no 7112

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 March 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 903 493 peteruth@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 jonandhel@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

Please always use the current version of Hot News for the correct contact information. If you would like to be a local contact, please get in touch with us! 13

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Did you know? Access to Work If you have a disability and want to start working or stay working, you might be entitled to an Access to Work grant. This grant helps pay for practical support if you have a disability, health or mental health condition so you can: • start working • stay in work • start your own business How much you get depends on your circumstances. The money doesn’t have to be paid back and will not affect your other benefits. There is no set amount for an Access to Work grant. How much you get depends on your circumstances. The money can pay for things like: • • • • • • • •

adaptations to the equipment you use special equipment fares to work if you can’t use public transport a support worker or job coach to help you in your workplace a support service if you have a mental health condition and you’re absent from work or finding it difficult to work disability awareness training for your colleagues a communicator at a job interview the cost of moving your equipment if you change location or job

Access to Work grants are only available if the employer is based in England, Scotland or Wales. You must be 16 or over and either about to start a job or work trial or in a paid job or self-employed (you can’t get a grant for voluntary work). You can contact Access to Work at: Email: atwosu.london@jobcentreplus.gsi.gov.uk Telephone: 0345 268 8489 Textphone: 0345 608 8753 If you do contact them, it would be useful if you know: • • • • •

your National Insurance number your workplace address, including your postcode the name, email address and work phone number of a workplace contact (eg your manager) your unique tax reference number (if you’re self employed) the name of your New Enterprise Allowance mentor (if you have one)

Plan ahead! Make sure you always have handwarmers or a headscarf with you - even in summer as air conditioning or a cool breeze on a warm beach can trigger Raynaud’s.

Wear gloves when getting things out of the fridge and freezer.

Don’t smoke! Cigarette smoking is harmful for you and everyone around you. It can also reduce the body’s temperature by one degree over a twenty minute period.

Keep your clothes and shoes in an airing cupboard overnight so they are nice and warm when you put them on the next day.

In our next issue, we would like to share some footcare tips. If you have any, please let us know! Thank you!

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Did you know? Professor Christopher Denton recently gave a webinar on renal complications in scleroderma and in this session he provides insights on its impact for scleroderma patients. This was through the Scleroderma Research Foundation, a charity in the USA that invests in medical research to find improved therapies and a cure for scleroderma. To view this talk, visit http://www.srfcure.org/for-patients/webinars and scroll to number 14.

Are you planning a family? Are you a patient with systemic sclerosis who plans a pregnancy for the years between now and 2016? Or are you a patient already pregnant? Perhaps you are interested to participate in an international observational prospective study initiated by EUSTAR on pregnancy in women with systemic sclerosis: IMPRESS 2 Study: International Multicentric prospective study on PREgnancy in Systemic Sclerosis.

East Anglian Scleroderma Group The East Anglian Scleroderma Group is a Scleroderma Society group but all are welcome. Our next meeting is on Saturday 30 August 2014 at 2.45 pm in Felixstowe. We will be looking at ‘Understanding and Managing Scleroderma’, the Scleroderma Society publication. Please contact me if you would like more information. As we mostly meet in East Suffolk, we are effectively a Suffolk Group but we know there are now quite a lot of people with scleroderma in Norwich and the surrounding area. If you would be interested in a get together in Norwich, would be prepared to organise it or can offer accommodation, please let me know. Jacky March Tel: 01394 286637 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!

For more info, please email info@raynauds.org.uk.

One of our supporters, Liz, is organising a walk with a difference. In June 2015, a relay walk will take place starting at John O Groats and finishing at Land’s End. Liz is looking for contacts along the route who can help to co-ordinate their area. If you are willing to help, or would like to take part, please email lucy@raynauds.org.uk Thank you.

We are proud to be associated with :

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. The website is www.raynaudsandscleroderma.co.uk and Anne is happy to receive emails to anne@raynaudsandscleroderma.co.uk as well as calls to 07530 810 964. We know she would love to keep in touch with friends she has made through the RSA over the years.

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‘Skating around the Christmas Tree’ 16cm x 16cm 10 cards for £3.50 with free p&p

‘Stockings over Fireplace’ 14cm x 14cm 10 cards for £3.50 with free p&p

‘Penguin Fun’ and ‘Wrapping up Warm’ TWIN PACK • 13cm x 13cm 10 cards for £3.50 with free p&p

CHRISTMAS CARDS Although we are in the throes of summer, we wanted to include our 2014 selection of Christmas cards for those of us who like to start preparing early! They are available at www.rsa-shop.co.uk or by calling head office on 01270 872 776.

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