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30th Anniversary Edition
Issue No. 121
Cool Million Appeal reaches £676,000 Calcinosis Project
a e y e er e
A new grant has been awarded to Prof. Richard Winpenny at the University of Manchester to research further into calcinosis. Patients with scleroderma can develop calcium-containing lumps within and beneath the skin. These lumps, which are called ‘calcinosis’, often ulcerate through the skin surface and can become infected. They can be very painful and disabling. They develop especially over pressure points, for example in the fingers (where they can have a major impact on hand function), and over the elbow and knee. Calcinotic deposits in patients with scleroderma are common, occurring in around 20 - 40% of patients with the limited form of scleroderma.
Volume 3 2012
In this issue...
Nailfold Capillaroscopy Nailfold capillaroscopy is an imaging technique of interest in both clinical and research environments. It allows direct visualisation of the capillaries (the very small blood vessels) of the nailbed. These blood vessels are usually abnormal in people with scleroderma (systemic sclerosis). The Raynaud's & Scleroderma Association is funding a research study for 2.5 years at Salford Royal and the University of Manchester, which started in May 2011. This study aims to assess two capillaroscopic imaging techniques: highmagnification videocapillaroscopy, and low-magnification dermoscopy.
Raynaud’s - Hints & Tips Louise Parker Page 3
These articles are continued on page 8
Pedalo Challenge Raises over £23,500 Well we did it but the weather was not in our favour! However, before I give an account of the challenge I just want to say a huge thank you to everyone who supported me. I really mean from the bottom of my heart, that without such wonderful support and enthusiasm from everyone, including many health professionals, I doubt I would have made it. Thank you all so much. See pages 10 & 11 for full report.
Clinical Trials Dr Voon Ong Page 6
Calcinosis Project Prof Richard Winpenny Page 8
Message of support from Sir Steve Redgrave
Annual Conference Our 30th Anniversary Conference will be held on Saturday 22nd September at the Mercure Hotel in Chester. There are still a few places available if you haven’t already booked. Joining us to give their expertise on the latest research and treatments are Professor Dame Carol Black, Professor Chris Denton, Dr Marina Anderson, Dr Maya Buch, Dr John Pauling, Professor Ariane Herrick, Professor Jaap Van Laar, Sister Sue Brown and Louise Parker, Lead Nurse - Connective Tissue Disease. Our member speaker this year is Hannah Gray. We are hoping to have a really special conference this year to celebrate 30 years. Do join us if you can.
Celebrating 30 years 1982 - 2012
New Trustee Prof David Scott Page 13
C P T
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Welcome Dear Readers, Anne H Mawdsley MBE
Our 30th Anniversary Cool Million project has kept us all busy - my thanks to everyone for their support. We still have a long way to go but with your help we can make it. I hope you managed to enjoy the very few warm days we had this summer.
No Decision About Me manage their condition and Would you like to chat? what their preferred end Without Me Shared decision making is a process on which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences. Patients are supported in order to deliberate about the possible benefits and consequences of treatment options. Poor quality decisions get made when the patient is unaware of all the treatment options and the clinician doesn’t know enough about the patient’s personal circumstances. We need to acknowledge that while the clinician has expertise in diagnosis, prognosis, treatment options and outcome probabilities, only the patient knows about their own circumstances, values and attitudes to risk. Good decision making brings both sets of expertise together. Many of us have personal experience of the NHS, either because we have had to use its services or have supported friends and family with their care. Scleroderma is no exception. Whether the NHS has helped you or not, we need to make sure that the NHS works for us. Everyone who uses the NHS should have the right to be fully involved in all the decisions made about their healthcare needs. From what their diagnosis and condition means for them, having a say in what treatment they would like, to how they want to
result would be. Decisions made about our healthcare need to be made with us. We should be able to tell the GP, nurse etc. what we feel is right for us. I am on the Patient & Carer Network and the Joint Rheumatology Committee at the Royal College of Physicians in London, who are very much involved in the process of shared decision making. I will report back in a future issue of Hot News on any further information which becomes available on this topic.
DLA Help Please
We are here for you. If you have a problem or are concerned about your condition or not sure what to do about hospital appointments, referrals etc. do give us a call. I regularly talk to members, many of whom have similar problems to myself, and I think it helps us both knowing that somebody understands. I have to say that the most talked about subject is bowels! At last people are happy to talk openly about this embarrassing subject.
The RSA is happy to help members on an individual basis should you have a specific need e.g. a piece of equipment to help you in the home, which is not available through the NHS or your local Membership and Handy council. If you feel we could Cards help then do ring to discuss. Do any members have any experience with filling in DLA forms and dealing with appeals? If so and you think you may be able to help others, please get in touch.
We now have some very attractive membership cards to replace the old ones. They are similar to a credit card and can easily be stored in your purse, wallet etc. If anyone would like a replacement card, please send an SAE with your request stating ‘New Membership card’. In addition our new posters are designed to create awareness. We also have new Handy Cards for both Raynaud’s and scleroderma for handing out to people, explaining about the conditions. Please help to distribute if you can. (See page 12)
My New Friend! I have bought myself a folding motorised scooter, which I have named Hetty my Helper! I am afraid that pride has gone out of the window and I now have the freedom to get around. I am still nervous crossing the road as my top speed is 4mph. Will let you know how I get on!.
With warmest wishes
Chief Executive Anne H Mawdsley MBE President Prof. Dame Carol Black DBE Trustees Barry Hicks Joanna Kaddish Beverley Myers Professor Jeremy Pearson Professor David Scott Patrons Sharron Davies MBE Roger Jefcoate CBE Veronica, Lady Piercy Nick Ross David Wilkie MBE Medical Advisors Dr. M Anderson Prof. J Belch Sister S Brown Prof. C Denton Prof. A L Herrick Dr. C Lovell Dr. R Macdonald Prof. P Maddison Prof. R Moots Prof. D Scott Prof. A Silman Dr. D Veale
Head Office: 112 Crewe Road, Alsager Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: email@example.com www.raynauds.org.uk Charity Reg. No. 326306
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The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.
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Raynaud’s Raynaud’s phenomenon – Hints & Tips Raynaud’s phenomenon is an episodic circulatory condition, which predominantly affects women in its primary form, but affects almost all patients who have scleroderma. It is usually associated with triphasic colour changes (usually but not always: white, blue then red) numbness, pain and tingling. Hands and feet are the most commonly affected areas but some patients also suffer with cold ears, nose, lips and nipples. For many sufferers Raynaud’s is a nuisance and can be managed well by a combination of practical approaches, complementary therapies and medication. For a smaller number of patients the combination of Raynaud’s and Scleroderma can have a huge impact on their quality of life due to persistently poor circulation, ulceration and occasionally the loss of fingertips due to gangrene. Familiar stories relayed to me in my clinic are - how turning keys in locks is virtually impossible, going food shopping (especially in the frozen food aisle!) is miserable and getting to the till is even worse due to fumbling with purses, cards and change.
Not being able to hold a cold glass on a summer’s day and a freezing steering wheel in winter makes life just that bit more challenging on a day-to-day basis. Finally, the increasing prevalence of air conditioning can turn a fun shopping trip or a family meal into a test of endurance. Everyone has their own way of coping with Raynaud’s but I will outline some suggestions here that may be of some help. My patients have told me of some brilliant coping strategies they often use too - I have included some of them below. Practical Approaches Prevention is key – Patients tell me once they are cold they take a long time to warm up again so always be prepared and leave plenty of time to get ready. Layering clothes is better than one big jumper or coat. Thermals, vests, long sleeve t-shirts with a jumper and insulated/windproof coat, hat, scarf and gloves are all necessary to fight the cold. Thermal or insulated boots are useful
too. They need to be comfortable, well lined and patients often buy a size or half size bigger to accommodate thick thermal socks too. Hand warmers to sit in your gloves or one in each coat pocket can be helpful especially if you are going out for a few hours. Silk thermal liners from outdoor/camping shops are useful to put under your normal gloves as an extra layer of insulation without adding bulk. Putting your clothes on the radiator to warm up before putting them on or giving your socks and gloves a blast with a hairdryer can help too. If you can start the car a few minutes before going out to put the heater on this will help to warm the car up. These are more of a challenge but worth remembering - as far as possible, keep the temperature around you constant and bear in mind that stress and emotion can also trigger attacks.
Last but not least, smoking makes Raynaud’s symptoms much worse Complementary therapies Some evidence has implied that certain vitamins and supplements can help with circulation. These are Gamolenic Acid (GLA) – this is available in its own form from health food shops or it is also present in high doses of Evening Primrose oil and Starflower oil capsules. In any case, check the ingredient label on which one you want to buy and check how much GLA is in each capsule. The recommended dose is around 320mg per day. You may need to add this up and often means taking 23 capsules a day to get the recommended dose. You can also get Maxepa (5 caps twice a day) or Omacor (4 caps a day) from your GP on prescription. These doses will ensure you also get the therapeutic dose. Ginkgo Biloba and ginger supplements are also widely available and can be useful. Some patients have found a combination of any of the above can also work well. Medication The most commonly prescribed medications from our unit are listed below, this is not an exhaustive list and many patients take other tablets, which work well for them.
Losartan 25-100mg once a day Diltiazem 60mg three times a day Fluoxetine 20-40mg once a day In severe cases, an Iloprost infusion may be necessary. This is a potent vasodilator, Louise Parker which opens up the blood vessels allowing the blood to circulate to the peripheral areas more easily. Louise Parker – Lead Nurse, Connective Tissue Disease, Royal Free London NHS Foundation Trust
NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free 020 7472 6354 (For Pulmonary Hypertension Enquiries)
Specialist Nurses Royal Free 020
Sue Brown Bath
01225 428 823
Liz Wragg Manchester
0161 206 0192
Specialist Nurse Leeds 0113 Jan Lamb Liverpool
0151 529 3034
Karen Walker Newcastle upon Tyne
0191 223 1503
Audrey Hamilton Belfast 02890
Paula White & Julie Ingall Portsmouth 02392 286 Jayne McDermott Sheffield 0114 Lucy Pigram Brompton
077588 943 175
(For Lung Enquiries)
Steve McSwiggan Dundee 01382
(Only available Mon, Tues & Wed mornings) The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice. The nurses who run the advice lines also have very busy schedules and therefore on occasions you will get an answerphone to leave your details for the nurse to get back to you.
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Doc Spot Your Questions Answered Professor Chris Denton
Consultant Rheumatologist, Royal Free Hospital
I have a 3 year old granddaughter who has been diagnosed with Raynaud’s. How common is this? Our local paediatrician is planning a drugs trial with my granddaughter and I am worried about it. Are there any medications that can be taken by young children with Raynaud’s? Raynaud’s can occur at any age, but onset under 5 years old is very uncommon. Treatments could include vitamin and other nutritional supplements that have been helpful in adult cases. Prescription drugs are usually avoided in this age group, partly because it is difficult to assess the severity of symptoms or document benefit at such a young age. Any drug trial involving children needs very careful ethical review and your local paediatrician should be able to discuss this with you. I was diagnosed with Raynaud’s when I was 20 and now have a 15 month old son who always has cold hands and feet. My doctor says he is too young to have Raynaud’s – is this true? Although Raynaud’s has been reported in very young infants, it is uncommon. All small children tend to have cold extremities in low temperature because it helps the body to conserve heat and this is especially important in children. Raynaud’s can occur in more than one member of the family but is generally primary Raynaud’s without any more serious disease association. I feel like I’ve tried everything available to help my Raynaud’s and now I’m considering trying biofeedback. Is there any evidence of this working and is it worth trying to find someone who specialises in it? There have been some trials of biofeedback for Raynaud’s symptoms
but this is not a generally available or accepted treatment approach. More research is needed to establish if it is helpful and whether it might be useful in primary or secondary Raynaud’s sufferers. Biofeedback is essentially a way of educating the involuntary nervous system to increase blood flow to the extremities. It is likely that only certain cases might respond depending upon the underlying type of Raynaud’s. I have been given the opportunity to have Iloprost to help with my painful Raynaud’s but I am concerned about the side effects. Do the side effects last just while the drug is being administered, or will I keep getting headaches/facial flushing even after the 5 day infusion period? Iloprost is a drug that can help Raynaud’s by improving blood supply to the extremities and may improve complications such as digital ulcers. It is a form of prostacyclin, a natural substance produced by the blood vessels that may be deficient in Raynaud’s. It causes side effects such as flushing when it is being administered but these disappear almost immediately when the treatment is stopped although the benefit of treatment often remains for several weeks. I have primary Raynaud's and my blood test showed that I have negative ANA. Can this change with time or does negative ANA mean I will always have Primary Raynaud's? Primary Raynaud’s means that symptoms of blood vessel spasm in the extremities, triggered by cold or emotional stress, are not associated with any other medical condition. It is much more common than secondary Raynaud’s associated with an underlying disease such as
scleroderma. By definition patients must have negative antinuclear antibodies (ANA) on blood testing and normal nailfold capillaries by capillaroscopy. In general these tests do not change, especially if they have been tested twice at an interval of more than 12 months, but if there are any clinical concerns such as development of other symptoms or complications such as digital ulcers, then the tests should be repeated. I have just been diagnosed with thermal urticaria, which I am told can be related to Raynaud’s. Can you tell me more about this? Urticaria is an itchy rash that develops when histamine and other factors are released from blood cells in the skin. It can be triggered by allergies or insect bites. Sometimes Raynaud’s can precipitate the rash perhaps due to the cooling of the skin associated with an attack. I was diagnosed with primary Raynaud’s about 7 years ago and since then I haven’t noticed any evident degeneration of the symptoms. Raynaud’s is affecting both feet and hands on a daily basis. I’ve recently had blood tests to investigate the level of ANA, IgG, thyroid and liver function. The results reported a positive 1:1600 ANA (centromere pattern) level and high MCV and MCH. My GP said this is normal in people with Raynaud’s but I am a bit concerned that these could be indicators of secondary Raynaud’s. The blood test results I had 7 years ago reported a negative ANA. Would you advise further investigations, perhaps consulting a rheumatologist, or is it enough to have regular blood tests? The majority of cases of Raynaud’s are not associated with any underlying disease (therefore primary Raynaud’s) and these are associated with normal nailfold capillaroscopy and negative anti-nuclear antibody (ANA). Some patients with Raynaud’s have a positive ANA and/or abnormal nailfold capillaries and these individuals may over time develop features of a connective tissue disease. Sometimes such cases are termed ‘autoimmune Raynaud’s’ to distinguish them from primary cases.
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Doc Spot Around 1 in 10 progress if they are followed up but this may occur after several years. Therefore it would be worthwhile seeing a specialist and perhaps having a capillaroscopy examination and a clinical assessment. ACA is a particular pattern of ANA that occurs more often in the limited form of systemic sclerosis. I have a white chalky patch of skin on the tip of my left forefinger, partly under my nail. My doctor said it was probably a calcium deposit connected with my Raynaud's. I have had Raynaud's since I was 6 and am now almost 72 and I have never experienced this before. Could this be a symptom of scleroderma? Raynaud’s does not directly lead to this feature, but some forms of scleroderma are associated with the formation of chalky deposits under the skin or around the joints. These deposits contain calcium and are called calcinosis. They can lead to local discomfort of ulceration of the skin or might sometimes become a focus for infection. Sometimes local surgery is recommended but there is no proven medical therapy that reliably improves calcinosis although some treatments may benefit individual cases and this is an important area of research. An X-ray of the hands can be helpful and other tests can confirm whether scleroderma is responsible. What is the best way to dress finger ulcers? I dress them myself and find it very hard. Dressings are important and you should take advice from your family doctor or from a hospital clinic. The correct dressing depends on the location and type of ulcer. Factors that are considered include the presence of infection, whether the ulcer is dry or discharging and if it is over a moving surface such as a joint or at a site prone to trauma. I have Raynaud’s and am taking nifedipine. I have recently started having swallowing and digestive problems and my rheumatologist has diagnosed me with scleroderma. However, I have read that nifedipine can cause swallowing difficulties, so could this be the cause rather than scleroderma? I’m not in denial about having scleroderma but I
just want to be sure the swallowing problems aren’t caused by something else. Scleroderma can lead to Raynaud’s and swallowing difficulties, usually due to altered ability of the muscle in the oesophagus to move correctly. Drugs like nifedipine can help Raynaud’s by reducing the tendency for vessels to go into spasm during an attack. However, this can sometimes aggravate swallowing difficulty by also reducing oesophageal movement. Overall though in most patients the benefit for Raynaud’s outweighs any swallowing effects that can often be effectively treated by other drugs. Is there any treatment for lung fibrosis? Lung fibrosis is common in scleroderma, occurring in around a third of patients, but may be mild or severe. Mild fibrosis may not require major treatment unless it is worsening but more extensive cases can be treated with drugs that suppress the immune system, such as cyclophosphamide. Clinical trials have confirmed the benefit of this treatment in more severe cases but as with any potent drug there may be side effects. There are other treatments that are used in lung fibrosis and new drugs are currently being tested so that in the future there are likely to be additional treatments. I have had horrendous reflux and vomiting during the night. The reflux disturbs my sleep and I wake coughing and choking on vomit. A gastroenterologist is arranging an urgent scope for me. I have tried sleeping on several pillows, but because I experience muscular skeletal pains, I am very uncomfortable. I also have iron deficiency anaemia and my gastroenterologist is arranging iron infusions for me. Can you suggest anything that might help me? Scleroderma and other connective tissue diseases are often associated with swallowing problems and reflux of stomach acid or food into the throat causing heartburn and vomiting. This occurs due to reduced strength in the muscles of the oesophagus (gullet) that usually control swallowing. Sometimes food can become stuck in the oesophagus or inflammation (oesophagitis) may cause scarring or narrowing (a stricture) that can be
treated at time of gastroscopy. It is important for you to have a gastroscopy to assess this and also check whether there is any cause for bleeding in the stomach that might explain a low iron level and anaemia. How is diet relevant to scleroderma? Can it make a difference? Diet is relevant to scleroderma in several ways. First, it is common to lose weight in scleroderma and so maintaining a nutritious diet is important. Small meals that are easy to swallow and have high energy content are usually recommended. Since vitamins and nutrients may help to relieve symptoms of Raynaud’s, having a good diet is important and this may be supplemented by vitamin preparations. Finally, sometimes the bowel symptoms of scleroderma are worsened or improved by certain foods. Some patients observe improvement when reducing wheat containing foodstuffs or by adjusting dairy products or lactose rich foods but these effects are not universal. I have had many tests for my gastro problem which was diagnosed as bacterial overgrowth. I have lost weight and wondered if there is anything I can try? I have tried Probiotic drinks but they didn’t help. I also have a dry mouth. The intestinal system is almost always affected in scleroderma. Dryness of the mouth can be very troublesome and results from inflammation and fibrosis of the salivary glands. Slow contraction of the muscle in the bowel wall can lead to stagnation of the bowel and overgrowth of bacteria ading to bloating, diarrhoea and poor nutrition. This leads to a condition called ‘small intestinal bacterial overgrowth’. Antibiotics given by mouth can be very helpful in treating this and this is the main treatment that is used. Courses of antibiotics are often given in rotation to avoid bacteria becoming resistant. Probiotics modify bacterial types that live in the bowel by introducing "good" bacteria. Unfortunately this may not be so good in scleroderma and so although some patients report benefit, others do not. Therefore if you try them it should be for a short time at first to assess benefit. Probiotics cannot be combined with antibiotics as the two may cancel each other out.
If you have a question you would like Professor Chris Denton to answer, please send to Head Office 05
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Clinical Trials Making sense of Clinical Trials in Scleroderma
Dr Voon Ong
The practice of medicine is often thought of as much an art as a science. Even in scleroderma, potions of warm milk and procedures such as bleeding, whose value was at best dubious, were in common usage in ancient times when science was absent in the art of healing. Thankfully, medical research in scleroderma has laid the foundations for the advances made in the care of our patients over the last few decades.
Clinical trials form the platform that links medical research with clinical practice in scleroderma. The trials examine how a new treatment works in a clinical setting. It is absolutely critical that for a drug to be approved for use in clinical practice, it must be shown to be effective in clinical trials. For example, Bosentan was tested in many patients with scleroderma in several major clinical trials before it was finally approved for treatment of pulmonary hypertension (a complication of scleroderma with increased blood pressure in the small arteries in the lungs) and ulcers affecting the fingers (digital ulcers). The success of these trials with Bosentan has clearly transformed the lives of many patients with scleroderma. This is particularly important in an uncommon condition such as scleroderma where there is a great need for better treatments.
Other than the clinical benefits, the trials also seek to answer some of the scientific questions that would help us to understand scleroderma better. Participants in clinical trials can therefore play a more active role in their own health care, gain early access to new research treatments before they are widely available, and help others by contributing to medical research. Patients will also receive regular and close monitoring by the medical team conducting the research. There are possible risks to clinical trials. These may include unpleasant side effects of the treatment but the trial procedure will ensure that these will be managed as soon as possible by the appropriate trial team who will look after you.
New experimental treatments are not always better than, or even as good as, standard care. Even if a new treatment has benefits, it may not work for all. The trial may require more of your time and attention including trips to the centre conducting the trial, more treatments and sometimes more complex treatments. All clinical trials are governed by regulatory bodies with clear guidelines about who can and cannot participate. Inclusion and exclusion criteria form the gateway of patients to clinical trials. Factors that permit patients to be selected for trials are
called inclusion criteria whereas factors that prevent patients from entering trials are called exclusion criteria. The trial follows a meticulously planned protocol that details what researchers and participating patients must do in the study. These rules are important to ensure suitable patients are chosen and to ensure safety for all.
There are several new and exciting clinical trials underway at major centres in the UK. These trials address a range of problems and complications in people with scleroderma. Some of these trials listed below may be familiar to you and indeed, you may be taking part in them. Acronyms for the trials are also listed. European Scleroderma Observational Study (ESOS) This is an observational study across many European centres that examines response of patients with early active diffuse cutaneous scleroderma to the different immunosuppressant drugs that are currently prescribed by doctors. These medications include Mycophenolate mofetil, Methotrexate and Cyclophosphamide. A dedicated website has been set up for this trial: http://www.ssc-esos.net/home.asp Digital Ulcers with mAcitentan (D U A L 2) Hot on the heels of the success of Bosentan in prevention of new ulcers in people with scleroderma, this trial will examine the effectiveness of a similar drug, Macitentan in prevention of new digital ulcers over a 16 week period. A major clinical study, SERAPHIN recently reported that Macitentan was found to be effective in patients with pulmonary hypertension and the trial design for DUAL2 will use a similar dose pattern of Macitentan in patients with digital ulcers. CC-4047 This trial will examine the effectiveness of a new agent, Pomalidomide, a new compound in patients with diffuse Scleroderma and lung fibrosis (inflammation and scarring of the lungs). B-cell therapy (MEDI-551) in Scleroderma This study examines the effect of B cell therapy called MEDI551 with a novel compound in patients with scleroderma who also have some skin thickening in scleroderma. Tocilizumab This major study will examine the effectiveness and safety of targeting a particular factor, Interleukin-6 in those with diffuse scleroderma. Patients with fewer than 5 years of disease and active progressive skin disease are particularly welcomed to participate in this trial. Tocilizumab is one of the new biological agents (antiTNF drug is also a biological agent) that has been successfully used for patients with rheumatoid arthritis. There is some evidence to suggest that Interleukin-6 may be important in the scarring process (fibrosis) in scleroderma. Continued on page 7
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Clinical Trials Not all trials are drug-related Continued from page 6 Nailfold VideoCAPillaroscopy study or CAP Using this new non-invasive tool videocapillaroscopy, this trial asks why some patients are more likely to develop digital ulcers than others. Risk factors that may predict formation of these ulcers are examined by comparing two groups of patients: the first group include patients with past history of digital ulcers or current ulcers, and the second group with patients with no ulcers. Pressure and Pain in Scleroderma an Evaluation of a Simple Intervention (PISCES) This trial examines the effectiveness of a shoe insole with heat retaining and cushioning properties in reducing foot pain and foot pressure in patients with scleroderma. Some clinical trials are set up to examine the way we diagnose problems or complications in patients with scleroderma and to understand the causes of the disease among these patients. Early, Simple and Reliable Detection of Pulmonary Arterial Hypertension (PAH) in Systemic Sclerosis (SSc) (DETECT). This is an important study that examines the different screening tests to tell us who needs to have a right heart catheter, (a technique that requires insertion of a guide tube into the blood vessels in the groin to the major heart vessels to diagnose pulmonary hypertension) and who does not. The trial has been completed and the first results will be announced shortly. Digital Ulcer Outcome (DUO) Registry This is an observational study that collects clinical information on patients with digital ulcers. This will help to chart out the progress and outcome of these patients and response to treatments. International, Prospective Registry For The Documentation Of First-line And Maintenance Therapy In Patients With Pulmonary Hypertension (CompERA-XL)
Similar to DUO registry, this study aims to obtain long term information on the different drugs that are used for treatment of patients with pulmonary hypertension in Scleroderma. Myositis Study Inflammation of muscles or myositis can affect a small proportion of people with scleroderma. The aim of this study is to better understand what the cause of myositis is, by collecting clinical information and performing genetics and antibody studies on a blood sample. Further details about these trials should be discussed with your doctors or the hospitals currently involved with these studies. The Raynaudâ€™s & Scleroderma Association also works hard to bring together patients who are actively participating in these trials. As scleroderma is an uncommon condition, collaboration among many centres with an interest in scleroderma across the world is critical. A website www.clinicaltrials.gov lists the majority of international trials that are ongoing in various centres.
If participating, people should know as much as possible about the clinical trial and feel at ease to ask members of the health care team questions about it and the care expected while in a trial. Finally, attitudes and perception of clinical trials differ for each patient and the decision to take part in clinical trials is a personal one. It is important to consider all elements â€“ ask yourself what you can do to make scleroderma more treatable for you and perhaps what you would like others to do for you. It is hoped that participation of patients in clinical trials will move us closer to finding better treatments for scleroderma and improve our understanding of the biological processes underlying this condition. Dr Voon Ong, Consultant Rheumatologist, Royal Free London NHS Foundation Trust
Tocilizumab Study for Scleroderma at Cannock Hospital Do you suffer from systemic sclerosis (SSc)? Would you like to help with medical research? The purpose of the study is to learn how safe and effective Tocilizumab (TCZ) treatment is in patients with SSc. The study will last for approximately 2 years with 20 visits to the clinic. You or someone you know may be suitable if you: Are aged 18 or over
Have had SSc for less than five years
Currently have active disease
There is no cost to gain access to the research study and you will be cared for by doctors and nurses at Cannock Chase Hospital if you decide to take part.
Please call 01543 576449 for more information
Regional Meeting Cardiff We will be holding a regional meeting in Cardiff on the evening of 8th October at which Dr Tom Lawson will be speaking. A booking form will be sent to local members but if anyone else is interested in attending please call or email for details.
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Salford Study Calcinosis Project Continued from front page...
Prof Richard Winpenny
Although several different treatments for calcinosis have been proposed, it is generally accepted that none are effective. While surgery can ‘debulk’ an area of calcinosis (surgically removing all or part of a lump), it is not without risk, especially when performed in the hand where the blood supply is often poor in people with scleroderma. We need, therefore, to find a more effective treatment.
However, we first need to understand more about calcinosis
and, in particular, what calcinotic lumps actually consist of and if there is any way that these lumps can be dissolved. It is surprising that, until now, there has been little research into calcinosis. The work will be collaborative between the School of Chemistry and the Musculoskeletal Research Group, both at the University of Manchester. Calcinotic samples will be obtained from patients attending Salford Royal Hospital (either donated by patients after the lumps extrude through the skin, or at the time of surgery) and then transferred to the School of Chemistry. We are confident that the results obtained will suggest possible new approaches to treatment. The amount awarded to Prof Richard Winpenny, at the University of Manchester, for this six-month grant is £27,313
Nailfold Capillaroscopy Continued from front page. Update on nailfold capillaroscopy research at Salford by Dr Graham Dinsdale, Study Co-ordinator - July 2012 High-magnification videocapillaroscopy gives very detailed images and allows individual capillaries to be measured: this can be very useful in research. However, a special microscope is required, and this is available only in certain centres. In contrast, dermoscopy requires only a small hand-held piece of equipment (called a dermatoscope) and is more widely available. Questions which will be answered by the study include: 1. How many fingers should be routinely imaged in a clinical setting? 2. Can capillaroscopy be used as a reliable outcome measure in clinical trials of new treatments? 3. How do high-magnification videocapillaroscopy and low magnification dermoscopy compare? The study involves recruiting 200 volunteers: 100 people with scleroderma, 50 people with primary Raynaud's phenomenon and 50 control volunteers. Volunteers have all 10 fingers imaged with both videocapillaroscopy and dermoscopy in a study session lasting 1 hour. Some volunteers return for repeat imaging 1 week and 1 year after their initial visit. As of the end
of June 2012 we have recruited 70 volunteers with the majority of 1 week return visits completed. In total we have imaged over 1000 fingers so far, collecting more than 2000 images in the process! A group of capillaroscopy experts based in several European countries (Belgium, Sweden, Italy, Holland and the UK) are collaborating on this project with us in order to assess and score the collected images. Several UK Dr Graham Dinsdale centres are involved: Liverpool, London, Newcastle, and Salford. Collected images will be sent to these collaborators and, using custom computer software, assessed on multiple, detailed features including capillary size, shape and density. Each image will be assessed by at least four different scorers. Results will then be collected here in Manchester for further analysis. This image scoring process is starting imminently and is expected to take approximately 12 months. We are very grateful to the Raynaud’s & Scleroderma Association for funding this study, and to everyone who is taking part.
Microscope system for high-magnification videocapillaroscopy.
Dermatoscope for low-magnification imaging (shown without attachable camera).
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News Medical Anthropology - what does it mean? My name is Hannah Gray and I have just spent a few weeks with Anne and the team at the office as part of my dissertation. I have recently completed my third year at the University of Aberdeen studying Social Anthropology, which is the study of human culture and society. I hope to go into Medical Anthropology when I finish my degree. Medical Anthropology looks at the social and cultural factors that influence how we experience Hannah Gray and deal with illness. To do this I needed to find a subject for my dissertation and a group of people to spend time with. It seemed sensible to start with a subject I know and am passionate about – the Raynaud's & Scleroderma Association. I was diagnosed with Juvenile Systemic Sclerosis Scleroderma and Raynaud’s when I was eight and the RSA has played a huge role in helping me and my family come to terms with, learn about and deal with my illness. For my dissertation I am investigating the importance of the charity to its members. I find it interesting that although I do not feel defined by my illness, I do feel affinity with, and take comfort from speaking to fellow sufferers, despite everyone’s experiences and circumstances being hugely varied. I am
interested in exploring how people experience and understand chronic illness as part of their lives through talking about their experiences with other sufferers, and how the charity’s role differs from that of medical professionals. In order to gain an insight into the charity and what they do I was kindly allowed to spend some time at the office in Alsager. Luckily I had picked the week that Anne was doing her pedalo challenge so I stopped at Lake Windermere on the drive down. It was a great day despite the cold weather and I met lots of people there to support Anne. I can’t imagine what it was like in the pedalo as I was cold in my five layers just watching! When I got down to the office everyone was so friendly and helpful, answering all my odd questions
Everyone in the office seems to have a huge knowledge of the illnesses and a real understanding of sufferers' problems. and permitting me to hover around getting to know all about their jobs. I was amazed at the scope of work the charity gets involved in – from the personal member support of phone calls, emails and letters, to meetings with pharmaceutical companies to talk about products. It’s great to see what can be solved just by speaking to someone else who knows what you are going through. My dissertation isn’t due until March next year so I still have lots to learn and research to do. I hope to learn a lot more at the conference in September – where I am also looking forward to being this year’s member speaker!
“Multifactorial pathways contributing to the development and impact of foot problems in scleroderma” - study update What is the purpose of this study? Our study is exploring how exactly the various complex factors encountered in scleroderma contribute to the development and impact of foot problems. To identify the important factors, the participants in the study undergo a range of clinical examinations including careful measurements of the way the bones and joints of the foot work together, assessment of the blood supply and sensation to the feet, and assessment of the effect of scleroderma on the skin. These results will be analysed using a modern statistical technique called Structural Equation Modelling which will enable to us work out precisely which factors have the greatest effect on the dayto-day health of people with scleroderma. Progress so far The study started recruiting in February 2011 at the rheumatology department in Chapel Allerton Hospital, The Leeds Teaching Hospitals NHS Trust. By the end of the study we are aiming to recruit 150 people with scleroderma and 50 participants without scleroderma or any other major diseases (such as diabetes), who are 18 years old or over. We are on course to recruit the remaining 60 or so people with scleroderma and 40 or so controls by the end of February 2013. As the study is still in the phase of recruitment we do not have any results yet. However, we
So far recruitment has been promising, and 88 participants have already been recruited. have been able to make some useful observations, such as some patients have problems with the blood supply to their feet and perceive different types of sensations. The study has already led to some promising avenues of future research in the area of ulcerations of the fingers, calcium deposits, and patient education. It has also given rise to the development of a local patient led support group. As the study continues we will keep you updated about progress and will pass on any interesting findings via Hot News. If you are interested in learning more about the study or any research or clinical activities that we are developing in our department please do not hesitate to contact us, as we are happy to help. Contact details: Begonya Alcacer-Pitarch, NIHR Doctoral Research Fellow Section of Biomechanics and Physical Medicine Leeds Institute of Molecular Medicine, Division of Rheumatic and Musculoskeletal Disease and Leeds NIHR Biomedical Research Unit Telephone Begonya 0113 3924 964 or Richard W on 0113 3924939
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Pedalo Challenge Fell Foot to Bowness on Lake Windermere We travelled to the Lake District the day before the challenge and familiarised ourselves with the start and finish venues. Having been watching the weather forecast and wind direction for several days it looked as though we would have to start at Bowness and finish at Fell Foot. However, we decided to take the Lake Warden’s advice, as he thought the wind was going to change direction again to be south westerly, which would have been ideal, but we had to make a decision the day before. Don Gilet travelled up from London and we met him at Windermere station. He is best known for his roles in the BBC productions Babyfather, 55 Degrees North and EastEnders, where he played the part of Lucas Johnson, the preacher turned murderer. He is currently doing plays on BBC radio. After a pleasant overnight stay at Newby Bridge, Monday, the day of reckoning arrived and I have to admit to feeling a little nervous - would I be able to keep my legs going for the duration of the challenge? I was also worried about whether Don would be OK as he had not had a chance to practise in a pedalo, only the indoor pedal exerciser, which I also used regularly when the weather was too wet to practise outside. Several supporters were there to see us off from Fell Foot National Trust Park at 9.30am, on what was a miserable, black, cloudy day, with threatening clouds - but there was bad news. The wind had changed direction to a north easterly, so we were going to be pedalling into the wind and against the current. Fortunately there was only a slight drizzle but because of the waves caused by the wind and passing
Anne and Don at the ready!
steamers, each wave let water into the pedalo, so Don had to keep bailing out using plastic bags and water bottles. Unfortunately the helium Union Jack balloons we had taken to identify ourselves on the lake, just lay on the water due to the wind direction and were impeding our progress, so had to be removed at one point. It was very cold and therefore difficult to keep warm. I had two Heat Ease packs on my back, three thermal vests, three silver fibre tops, silver fibre socks, a woollen zipper, waterproof trousers and jacket and then a life jacket! Wet feet didn’t help but I was determined to finish whatever the consequences. I wanted to take photos from the boat, so had to keep taking my gloves off which meant getting my finger bandages wet. It was comforting to have a support boat close by, driven by my husband and Dr Mark Edwards, rheumatologist in Southampton, who had very kindly volunteered to help out onboard in case of any emergency. Sue, my next-door neighbour, was also onboard and was responsible for providing us with food and drink along the way. I have to admit to this being the biggest challenge I have taken on to date and as I have promised everyone, it was my last. The training had not only been very time consuming but also tough on the legs, especially as the weather leading up to the challenge had not been good. I had been training indoors on the pedal exerciser but mainly in the pedalo on water, doing approximately 8 miles a week and more at weekends. Continued on page 11
The wind blew the helium balloons into the water
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Pedalo Challenge Thanks a Million - Cool! Continued from page 10 Up to this point the furthest I had done in one stretch was 3 miles so I knew that 5 miles was going to be tough. The training had to be done in tandem so my poor husband was also very much involved - needless to say he is delighted that it is now over! Don was great especially as he hadn’t been in training as I had. He kept me entertained throughout and had music blaring out from his MP3 player, which helped to take our minds off what we were doing. Unfortunately he got cramp with about a mile and a half to go but worked through it as he said he wasn’t going to let a 70 year old woman beat him! At some stage I had to grit my teeth and keep pedalling as I was also determined not to be beaten. It was tough but a challenge is a challenge and there was a lot of money at stake. The Lake Wardens told me that nobody had attempted this before in a pedalo - now there’s a surprise! We were a tiny little speck on a huge lake. I had been told if we ran into difficulties we were to contact the coast guard or the Lake Warden and someone would be with us within 6 minutes. As it happened we were escorted from the halfway mark by two swans that remained at the side of the pedalo. I am not sure if they had been sent to make sure we survived OK.
During the course I asked Don if he was enjoying it (a silly question really!). He said ‘No’ but he enjoyed the reason he was doing it, in memory of his friend Roger Pemberton, an old school friend, who sadly passed away last year from scleroderma. It took 6 hours to complete the course. The frustrating part was seeing the finish but because of the strong wind we didn’t seem to be getting any nearer. We got there eventually and were given a wonderful welcome by supporters at Bowness. I feel satisfied that Don and I have made a substantial contribution towards the Cool Million, as I know many of our members have also done in a variety of ways. There is still a long way to go so we must continue to raise as much as possible by the end of the year. Finally, a big thank you to Don for giving up his time and energy - he even missed his train back to London which made it a very long day for him. We both agreed that it took a while to recover after the event but it was well worth it. The good news is that to date the challenge has raised over £23,500 and donations are still coming in. If you haven’t already done so and would like to contribute online, my justgiving site is www.justgiving.com/rsapedalo. Again my most sincere thanks to everyone - why don’t they have pedalos at the Olympics? Now there’s a thought!
Shell Former Employee Scheme The RSA was delighted to receive £500 in sponsorship for Anne’s pedalo challenge from Shell UK Social Investment. The money was donated via the Shell Employee Action Programme and was arranged by RSA member George Dickson, (pictured right), a former Shell employee. This scheme awards grants to current and retired members of staff or partners who regularly volunteer with a UK community group or charity. Grants are also awarded to individuals taking part in fundraising activities such as running a marathon for a nominated charity. The scheme awards 'top up' grants of 10% of the money you raise up to a maximum of £350 for individuals and £500 for groups (three or more staff). Many companies offer similar ‘matched giving’ schemes which can often double the amount of money raised by employees. If you think you might be able to support the RSA in this way please get in touch. Very many thanks to George for supporting the RSA and for requesting the donation from Shell. Anne also very much appreciated your support at Lake Windermere.
Virgin Money Giving
The RSA is registered with both JustGiving and Virgin Money Giving. The Virgin Money website is similar to JustGiving with fundraisers being able to set up a page on the website and collect donations. The biggest difference between the two websites is that the management fees are less on Virgin Money Giving so we get more benefit. If you want to find us on this site type in RSA or Raynauds. You can donate on the following website: http://uk.virginmoneygiving.com/giving/
Over the past few months our funds have been boosted by very generous donations made in lieu of flowers in memory of loved ones. At such a sad time we are most grateful to relatives and friends who have supported the RSA in this way in the knowledge that their contribution towards research will help to improve the lives of sufferers of Raynaud’s and scleroderma in the future. All donations have contributed towards the Cool Million Appeal to support research projects.
Publication costs for this issue of Hot News are supported by GSK. GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of GSK.
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Fundraising Manchester 10k
Alsager Inner Wheel
Thanks to the following Louise Shaw, who held a coffee morning in May and raised £112.
Well done to John Stanfield (left) and Gavin Warnes, (right) both of whom completed the Manchester 10k run in May. John raised £150 and Gavin raised £1,000 for the RSA. This was matched by his employer BUPA, who donated a further £1,000. Very many thanks and well done.
Three Peaks Challenge
Pictured above left to right, Ian Snowdon, Greg Lambert and Andy Smith. They completed the very tough Three Peaks Challenge in June and raised £1,465 for the RSA. This photo was taken on top of Snowdon. Andy’s wife, Angela has both Raynaud’s and scleroderma and is a member of the RSA.
80th Birthday party
Many thanks to Alice Crowe and her daughter Norma Thompson, who held a fundraising night for Alice’s 80th birthday party in May. £560 was raised in memory of Alice’s daughter Marina. Pictured above at the party with Alice are Marina’s three daughters Amanda, Alannah and Becky.
Karen Littley, President of the Inner Wheel of Alsager presents Anne with a cheque for £500. The majority of this money was raised by a sponsored static tandem. You will recognise Karen, as she is responsible for running our online shop and membership database at the office.
Open Garden Success
The photo shows the stall at which Marg Bacon and friends raised an amazing £1,030 by selling homemade products at an Open Garden event in July.
Fundraising Champion With the help of members who have been sending their unwanted jewellery, Barbara Buchan has now raised almost £16,000. She has been holding stalls at local fayres where she sold items of jewellery to raise funds for the RSA. Please keep sending your items to Barbara, but preferably not broken pieces except for scrap gold and silver. If you would like an acknowledgement, please enclose your phone number so that she can call you to say the package has arrived. Barbara Buchan, 6 Meadowlands, Woolpit, Bury St Edmunds, Suffolk IP30 9SE
Shonagh MacKenzie ran the Edinburgh Half Marathon in May raising a fantastic £390. Elisabeth Brown’s ploughman’s lunch in her local village of Blandford Forum raised £140. Paisley Stow Brae Church held a jubilee lunch and raised £200. Elenid Matthews organised a table top sale of crafts in June raising £150. Don Cunningham held another successful Pudding Club event and raised £150 in memory of his wife Judith, who was an RSA member. Brenda Holden once again persuaded her friends to take part in The Wirral Coastal Walk for which they raised £267. The Cox family held a very successful cake stall at their son Brennan’s school resulting in £400. Sylvia Cookson received donations totalling £575 for the RSA in lieu of birthday presents. Sylvia also donated a further £240, bringing the total to £815. Many thanks to all of Sylvia’s friends and family who supported the RSA. Drewena Brownlie’s daughter Claire and son-in-law Mark ran in the Aberdeen 10k and raised £620. Shirley and John Lynch would like to thank their local Mayor for inviting the Worcestershire RSA Group to a Coffee morning at Pershore Town Hall in July, raising £235. Margaret McKenzie raised £235 from her Percy Box, Craft Day and a speaking engagement.
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Bridgwater Young Farmers Club in Somerset raised £709 from a recent fundraising event. Suzie & Robbie Palmer kindly donated £157 from their wedding in July.
New Handy Cards
Please help to distribute these cards, leaflets and posters.
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Useful Tips Do you have a dry mouth? Having always been encouraged to chew sugar-free gum for my terrible dry mouth, I have finally found one that isn't full of all those artificial ingredients (particularly aspartame) you always find in chewing gum. It's called Peppersmith and it's made from real English mint so it actually tastes like mint, rather than a synthetic mint flavour and the chewy part is a tree sap - not a petro-chemical gum base. As well as being 100% natural, it is sweetened with something called Xylitol, which I had never heard of before. It comes from beech trees and has quite extraordinary properties: it fights the bacteria in your mouth. So not only does it stimulate any saliva you might be able to make, it also reduces the risk of tooth decay, and if your dentist bills are anything like mine, that's no bad thing. I hope it helps you too. This tip was taken from the BSSA newsletter Vol 27 Issue 2 Summer 2012. Have any members found other sugar free gum to be of help?
Did you know that it can help to drink water before having a blood test? By drinking water you hydrate your body, and it helps to increase the fluid level of your blood. This is because the plumper your veins are, the easier it will be to find them. By being dehydrated it decreases the amount of fluid in your blood, and can cause you to have poorer circulation. Another thing is to make sure you are comfortably warm for the test. Being too cold will restrict circulation. This information was given by a phlebotomist. Best Christmas Present Ever! My husband bought me an electric blanket for Christmas which you put in a chair and wrap around yourself - bliss! The warmth envelops your body, which is really good when your Raynaud’s is bad. The blanket was from the supermarket LIDL and the brand is Silvercrest - you can find them on the internet. I can honestly say it has changed my life with the warmth and comfort it has brought me! Heather Cook
World Scleroderma Day
ted Prof Chris Denton
On 29th June we celebrated World Scleroderma Day by creating awareness amongst the medical profession. Our thanks to Professor Chris Denton for supplying us with the following quote for the Press: “The importance of Scleroderma Day is to highlight this rare and often poorly understood condition but also to offer hope to sufferers. Better therapies are now becoming available and there is a great interest amongst health professionals and research scientists in developing new treatments. The Raynaud's & Scleroderma Association (UK) is funding research into several areas which will ultimately provide better care for patients and hopefully reduce the impact of scleroderma on patients and their families.”
What's in a name? There have been some recent developments at the Royal Free Hospital. From April 2012 the name has changed from the Royal Free Hampstead NHS Trust to the Royal Free London NHS Foundation Trust. This siginifies that the hospital has been granted Foundation Trust status which confirms that external assessors have judged that it is performing well in terms of patient care and financial management. Foundation status opens up opportunities to further develop services. We hope that the successful scleroderma and associated Pulmonary Hypertension services that are already nationally recognised will be able to develop further within this new structure. One small example of service development is the recent establishment of a specialist nurse led digital ulcer clinic, complementing the nurse led Raynaud's clinic that has been very successful over recent years.
Prof David Scott
We are delighted to announce that Professor David G I Scott has joined the Board of Trustees. Prof Scott is an Honorary Consultant Rheumatologist and Honorary Professor at Norwich Medical School with a longstanding interest in connective tissue diseases especially vasculitis. He has published over 250 articles, editorials and chapters mainly on this subject. He has in the past been President of the British Society for Rheumatology and Patient Involvement Officer to the Royal College of Physicians (London), where he increased his interest in patient issues and gained some experience of politics. He continues to follow an active academic research programme.
Turtle Doves are wrist warmers and fingerless gloves rolled into one. They’re designed to be worn on the wrist all day helping to keep your wrists and hands warm. Made from recycled jumpers, they are environmentally friendly and not only do they look and feel great but they are practical too. Every pair of Turtle Doves is unique; they come in all the colours of the rainbow... but they’re all green! Prices range from £10 plus £2 p&p For further details or to place an order visit: www.turtle-doves.com or call 01743 344702. Anne’s Tip - I wear a pair of Turtle Doves wrist warmers under my other mittens for extra warmth and they are not too bulky.
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Contacts News from Local Contacts Bath Our support group has been going for 13 years and at present has 11 members of which 4 or 5 meet together twice a year (not in the winter months) at the Mineral Hospital in the centre of Bath. Unfortunately some of our members are not well enough to attend these days but I try to keep in touch with them. Even if we cannot meet we Margaret Goff can still offer support to each other on the phone or by e-mail. We are an older group but that means we have a wealth of experience between us on living with scleroderma and associated conditions! New members of any age would be most welcome to join the group. Our next meeting will be at the RNHRD Bath (The Mineral Hospital) on Friday September 14th 2012 from 2.30pm to 4pm. Please contact me if you would like to attend. Margaret Goff
Manchester I am a member of a local support group for the RSA in the Astley area. We meet once a month in a local pub for a meal and catch up. There are five members of our group: Sue, Sarah, Sue, Ann and myself and during the meet-ups we swap ideas, discuss the different symptoms of Raynaud’s and scleroderma and how we overcome Gill Holden them in our day to day lives. We have fundraised for the RSA by organising charity evenings with family, friends and colleagues to have a good time and raise money with raffles, door prizes and auctions. These fundraisers also help to educate people about the conditions and how they affect the people who suffer from them and how to spot the symptoms for themselves. The most important thing for me about the meetings is talking to people who understand how I feel and listening to them when they are having a bad time. Gill Holden
North Wales When I was diagnosed with scleroderma I had to retire from nursing in March 2009. I was a Senior Sister in General Intensive Care and was working at my local District General Hospital at Ysbyty Glan Clwyd in Rhyl, Denbighshire. I had a successful nursing career, not only working here, but also in Cardiff, London and Bangor. When I was diagnosed I wanted to find out more and help others find out more, so I got in touch with the RSA who suggested I became a contact in my area. I often speak with newly diagnosed scleroderma sufferers on the phone, and send them information about the RSA through the post. I also give them a form to join since being a member benefited me enormously when I was diagnosed. As well as being a local contact I also give talks to local groups about the condition and make them aware of what it is and what’s it’s not. I hope in this way there is no confusion about the conditions – at least in my area! I have also given lectures to the Chiropody Association at their
national conference and continue to do so locally and nationally. Kate Owen
Portsmouth and Hampshire In December 2003, when I was 32, I was diagnosed with Limited Systemic Sclerosis (CREST) at a Rheumatology outpatients appointment. I left the hospital utterly bewildered after being told “Oh – we don’t see many of these here – it’s rare”. To understand more I sought information and thankfully Alison and Rene discovered the RSA. I obtained more information and support from the Cheshire based team than from anywhere else. I soon became a member and relished the ‘Hot News’ that dropped through the letterbox. Before too long, through the ‘Pen Pal’ column, I became friends with an elderly widow, Rene, 80 miles away. We wrote to one another, spoke frequently on the phone and as time progressed we enjoyed short visits and she became a dear friend. Sadly my fellow sufferer and friend passed away in October 2010. After this I decided to start a local support group. If you would like to chat on the phone, contact me by e-mail or even ‘snail mail’, I would love to hear from anyone. We could arrange a gathering at my home in Portsmouth or at a location along the central south coast. Alison Wright
Eastleigh I started an RSA group over 20 years ago and some of the original members are still with me. I started the group after Anne put me in touch with other RSA members in the Hampshire area. I rang around the members and sent Christmas cards to some of them to let them know that I had started a group and that if they wanted to get involved Kathy Allen to give me a ring. Our meetings are usually at my home, with about 7-9 of us coming regularly. Sometimes folk call me and just want to talk about problems associated with Raynaud’s and scleroderma, and often want to know if I have experienced similar things. They are usually quite relieved to know others have gone through similar symptoms and that I understand how they feel. The meetings are very informal and people often say it is the only time they can openly discuss how they are coping, as they often feel that others have little understanding of the conditions. It’s always surprising how many good ideas we come up with to help each other, for example advice on footwear, dry mouths, skin creams and bowel problems. We are always learning more about how to cope. Our meetings are roughly about every two months, but we know we can always contact each other in between. I myself have benefited from these meetings and have made many friends as a result. Kathy Allen
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Shirley & John Lynch
Four or five years ago at an RSA conference, my wife Shirley and I discovered there were others from Worcestershire in attendance, so we suggested that they might like to come to a meeting at our house to share ideas and experiences, and to support each other. Then, at Anne's suggestion, we added our name to the list of local support groups in Hot News. We now have members attending from all over Worcestershire, as well as one or two from North Gloucestershire. We now have about 14 members, six with scleroderma, and seven with Raynaud’s – and me with neither! We hold three or four meetings a year and one of these is usually a planning and strategy meeting for our stand we take annually at the Pershore Plum Fair over the August Bank Holiday. This stand aims to raise funds for, and awareness of, Raynaud’s and scleroderma. Another meeting follows fairly soon after the RSA annual conference so that those who have attended the conference can feed back information and updates to those who didn’t. One member of the group, Jonathan Small, recently trekked up Kotapaxi, a South American volcano, in memory of his mother who died several years ago from scleroderma. We have held two open events as a result, one was a Quiz night, and then another one afterwards when he showed us his stunning slides – followed by another jacket potato supper, and a session of 'knock-out' skittles! We have all become close friends, and we have a lot of fun! John Lynch
The Burton-on-Trent Support Group is now in its 7th year, way behind Anne with her thirty years plus, but still raising awareness of our conditions. Since our AGM in February our monthly meetings have ranged from a speaker from the Department of Works and Pensions to two local Community Volunteer Services talking about their roles within voluntary sector groups. Future speakers are Ian
Dawn, the son of one of our committee, who donated a kidney to his sister who has Lupus, and a joint meeting with an Occupational Therapist and a Skin Care and Camouflage Nurse Specialist. We held a fundraising Bingo night in May which was well attended by the local community and have been involved with other events, such as the South Derbyshire Liberation Day and holding a stand in the Hospital foyer to sell goods and give out leaflets. Our main fundraiser this year will be a Tribute Band evening on November 24th at the Guild Hall in Burton-on-Trent. We are also hoping to visit The Houses of Parliament for a tour on 26th November which will be followed by afternoon tea with our local M.P.’s. Sheila Jackson and Helen Nutland
My journey with Raynaud’s started over 30 years ago when I realised my hands were turning from white to blue when I was outside. I was referred to Ninewells hospital in Dundee where I was seen by Prof Belch and now receive Iloprost treatment. As a local contact I get many telephone calls from people, and often they are asking whether there is a heating allowance available for Raynaud’s sufferers. I tell them that sadly there isn’t but advise them on ways of keeping warm that have helped me. I have met many people with Raynaud’s, all with different stories and it’s good to share. To help myself I try to keep active with hill walking, gardening and occasionally skiing. Do get in touch if you would like to chat. Rose Bevan
I was diagnosed in May 2005 with Scleroderma and Raynaud's. I had a fabulous 2004; I had got married and had honeymooned in Mexico. However, on returning to Britain, I didn't feel well and ended up in the Liverpool Royal with Pericarditis. Apparently, this condition can be a symptom of Lupus and scleroderma and so the doctors started to look at the ANA and other factors in my blood. I was bemused by the possibility of having an auto-immune condition and once the extra water had drained from my heart, I was discharged and felt fine.Then on a country walk, my hands turned a deep blue and I knew there was a problem. My diagnosis of scleroderma soon followed. Now I live with tight skin, which has eased a little over time, sore joints, crooked hands and joints, lack of stretch, heartburn/acid reflux, microstomia (small mouth) digital ulcers and
Raynaud's. But I remain very positive. I have two young children, a fabulous husband and work as an English teacher. I have been in contact with several people in my area via email and telephone and in person and am always happy to talk. Helen Lingwood
LOCAL CONTACTS Burton on Trent, Helen Nutland
01283 566333 Ext. 5032
Bristol & Bath, Margaret Goff
Email: firstname.lastname@example.org South Cumbria/ Ruth Randall 01524 903493 North Lancs Email: email@example.com Eastleigh, Kathy Allen
Essex, Maureen Lucey
01255 473 309
Fife, Rose Bevan
Knaresborough, Tony Overend
London, Ruta Rackaityte
Email: firstname.lastname@example.org Manchester, Gill Holden
Merseyside, Helen Lingwood
0151 280 1194 07751 333 633
Email: email@example.com North East, Jessie Pickering
N. Ireland, Patience Bradley Mobile:
02890 592370 07966 416553
North Wales, Kate Owen
Portsmouth and Hampshire, Alison Wright
02392 367960 & 07986 900262
Rickmansworth, Marilyn York
Shipley, W Yorks, Bev Myers
Suffolk & North Essex, Jacky March
Surrey, Fay Collings
Worcestershire, Shirley Lynch
01386 553392 15
54167 RSA Hot News vol 3 2012v8_Vol1-09.qxd 13/08/2012 16:36 Page 1
RSA TRADING COMPANY LIMITED We now have a Trading Company for payment of our stock items with a separate bank account. Therefore when ordering stock please make cheques payable to RSA Trading Co. Ltd. Cheques for donations, fundraising, memberships etc, need to be made payable to RSA.
Christmas Cards - Buy Now!!
Stockings & Rooftop Twin pack of 10 cards (5 of each design) as illustrated Size 228mm x 86mm Price £3.50 (plus p&p)
Wording inside all cards
‘Warmest wishes for Christmas and the New Year’
Penguins & Keeping Warm Twin pack of 10 cards (5 of each design) as illustrated Size 137mm x 137mm Price £3.50 (plus p&p)
Christmas cards available while stocks last
Hot Togs Leggings & Thermolite Socks
Mobile Phone Holders
Hot Togs Leggings These are perfect as everyday winter leggings or as a base layer. They are made from a specially selected yarn and are brushed on the inside to trap warm air close to the skin. £12 plus p&p Hot Togs Thermolite Socks The socks contain a hollowcore fibre that traps warm air and retains its thermal properties even when wet. They are padded and cushioned for extra warmth and protection and provide added arch support. £7.50 plus p&p.
This stand-up holder is great for anyone who often lose their mobile phone at home or in the office! Your mobile phone will stick like magic to the holder on a silicone anti-slip mat, with no magnets or residue. The logo is also an easy way to help us publicise the RSA. £4.00 plus p&p.
Introducing Ellie Warmheart. Ellie is a delightful 18 ins doll, with a removable microwaveable inner heat pack, gently scented with French lavender. Maybe you have a daughter or granddaughter who would just love one of these! At just £14.95 plus p&p you won’t be disappointed!
This luxurious fleecy material contains treated millet grains and soothing lavender. Simply heat in a microwave to provide hours of soothing warmth and comfort. It is easier to use and much safer than a traditional hot water bottle as it completely removes the risk of scalding. Colours vary. £12.95 plus p&p.
Free Percy Cool Million Key Ring with all orders received by 30th September
Please use the order form on the reverse of the cover sheet to order any of the items on this page. PUBLISHED BY THE RAYNAUD’S & SCLERODERMA ASSOCIATION
112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: firstname.lastname@example.org Websites: www.raynauds.org.uk www.scleroderma.org.uk EDITOR: Anne H Mawdsley MBE Charity Reg. No. 326306
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