Issue No. 124
Volume 2 2013
Cool Million Melts Target
In this issue...
The RSA is proud to announce that the Cool Million Appeal, launched in 2010 by Anne Mawdsley MBE our founder member, has raised over one million pounds. This fantastic achievement has only been possible due to the generosity of our supporters - THANK YOU. The money is already being used (and will continue to be used in the future) to fund projects in the UK dedicated to finding out more about the management and understanding of Raynaud's and scleroderma in areas identified by patients. Projects which members originally requested and which are in progress include the composition of calcinosis lumps, gut and bowel problems and investigations into the lungs in scleroderma. If you have Raynaud’s or scleroderma and would like to make suggestions about what YOU feel are the most important areas of research, we would like to hear from you. Ideas will be considered and decisions made by the RSA Trustees as part of the work aimed at raising awareness and generating action across the UK medical profession to help find better treatments and ultimately a cure. Anne (pictured right) said “My heartfelt thanks to everyone who has supported this project. Every donation, large or small, has made a significant contribution towards achieving this goal and I feel sure that the future will be brighter for all those who suffer from Raynaud’s and scleroderma. Without our members, their friends and relatives we would not be in the position we are in at this present time, where we can offer hope for the future. In addition, I would like to thank the doctors and researchers who are working tirelessly on our behalf to improve the quality of life for patients. I sincerely hope that you will continue to support the work of the RSA so that research and welfare projects will progress and develop for many years to come, until a cure is found”. Anne is pictured above with Don Gilet during their Pedalo Challenge on Lake Windermere. Such challenges alone have raised £180,000 towards the final total.
Raynaud’s & Scleroderma Association Conference 2013 Mercure Chester Abbots Well Hotel Friday 20th & Saturday 21st September 2013
Research Update Page 3
DeSScipher Project Page 4
Fundraisers Page 12
Places are still available for our annual conference. Please do ring the office on 01270 872776 or email info@raynauds.org.uk and we will ensure you receive a booking form. The programme is varied as usual and topics will include an overview of Raynaud’s, digestive problems, lung involvement, calcinosis, skin care, nailfold capillaroscopy, welfare benefits, and an update on how local groups can become involved. We would love to see you there - catch up with old friends and meet new people too.
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
Amy’s Story Page 14
Welcome determination and focus can raise a ‘Cool Million’ for research. We need to build on this, raising awareness, educating, more discussion, more understanding, better selfmanagement … joining forces in the battle to beat scleroderma as an autoimmune rheumatic disease.
Elizabeth Bevins
Hello to you all! Blossomy Blossom! – well it doesn’t seem to be happening in the North West of England yet but I hear that buds are bursting in various parts of the UK and the wind-flattened daffodils have been trumpeting the onset of spring, and the warmer weather we crave. For me, the ‘hat season’ beckons – as it will for some of you who also have scleroderma’s ‘cousin’, the auto-immune connective tissue disease, lupus. It is a prompt to mention the importance of lifestyle choices and good nutrition including the right balance of vitamins for us all and mention that fat-soluble vitamin D seems to be topping the ‘must have’ vitamin chart this season – not too much and not too little - the Goldilocks portion as I like to call it! This edition of Hot News celebrates a host of activities and good news, including the fantastic achievement by you all for Anne Mawdsley, MBE and founder of the RSA, in raising £1 million for research funded by RSA. It proves those dare-devil exploits, including most recently husky trekking and the rainsoaked Pedalo challenge, were definitely worth it – thank you everyone and well done Anne. June 29th is World Scleroderma Day - and an opportunity for each of us to raise awareness of the condition not just amongst friends and family but with colleagues, students, with your - or your “nearest and dearest’s” - local club or society or group to start people talking about scleroderma.… what it is and what they can do to support the quest for more knowledge, better management and further research. Fundraising, alongside raising awareness of the conditions, remains a crucial activity for the RSA. Although ways of communicating and sharing information may have changed – particularly in the last 10 years as we embrace, or otherwise, the digital age – we still need donations and the support of active fundraisers to take the charity forward and develop its activities to help us support people in the future. This is an opportunity to thank you for your continued support and commitment as well as welcoming new members and people who are involved with the RSA and reading the newsletter for the first time. We have seen how dedication,
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A word about research activities … projects that you can contribute to and medical research we are funding. You will see information about the international DeSScipher project and UK invitation from the NHS Foundation Trust in Dudley on how to share information about chronic rheumatic conditions with children in the family. Thank you to Professor Ariane Herrick for her article on the research she and her team are involved in at Salford, which was also the first hospital I visited, in my new role, where the RSA is funding research. We are set to fund two further projects this summer and we will be giving more information about how those develop over the coming year, together with some updates about our other research developments across the country. I visited the Royal Free in London to meet Professor Denton, our Vice President and author of the Doc Spot, and his colleague Professor David Abraham. Visiting their ‘high-tech’ research laboratories was a genuine treat and a far cry from memories of donning a white coat and using the ‘Fume Cupboard’ in the school science lab! The Federation of European Scleroderma Associations (FESCA) meeting in Porto, Portugal in April – my first ‘international’ assignment. It was inspiring to be part of a cross European community of more than 20 patient organisations, many organised by volunteers, each dedicated to supporting those with scleroderma and Raynaud’s and sometimes additional rheumatic diseases. Business was conducted in English and intensive so I was humbled by the abilities of colleagues who contributed and discussed ideas in a language that was not their mother tongue! It brought home to me that scleroderma is a disease affecting all ages, and that its many forms - and the progression of the disease - can vary so much from patient to patient. The World Congress in Rome will be an opportunity to hear and be heard by Rheumatology experts from across Europe. We need to gauge how many people might attend from each country, so please let us know if you are interested in going. This opportunity is in addition to our UK RSA Conference in September, which is open for booking, and to which we look forward to welcoming existing and new friends and delegates. It was a pleasure to meet with members of the Burton on Trent group for the first time, recently. The RSA’s local contact, Helen Nutland, works in the Rheumatology team at the Queen’s Hospital, Burton on Trent, with Dr Nisar. Members of this active fundraising
group came together with two Mayors, the Mayoress, local business people and representatives from the spiritualist church – some of whom had cemented their practical and financial support by coming to the rescue when one of their main fundraising events was in jeopardy . I was invited to visit the British Society of Rheumatologists Conference by another patient representative organisation and found it both useful and interesting – visiting the patient representative groups and associations present and attending a lecture on the changing health landscape and the impact on Rheumatic disease. The conference is a ‘MUST’ for next year’s calendar for the RSA. News from the RSA team! I am pleased to announce that Helen Teal, our social media enthusiast, is now the Finance Officer. Recruiting financial expertise was a priority when I started this year and Helen, having played an active role in helping the team, and in the recruitment process, then decided to apply for the post! She has embarked on ‘streamlining and increased efficiency’ of the finances that is central for our successful development in the future. “What’s happening to developing your social media and online profile then?” I hear you gasp! Well, Lucy Meek who worked at the RSA last year and is now mother to a beautiful baby boy, was keen to work for one day a week, and has kindly rejoined the team supporting fundraisers. Sam Wilkinson has been driving us forward on complying with legislation, office procedures, policies and communications and is also working with Anne to arrange the RSA conference in September. Anne continues to provide support to members and those with scleroderma and/or Raynaud’s. The team make sure that those who contact the RSA seeking advice are aware of - and given the opportunity - to benefit from Anne’s help. Karen Littley has been busy with the online shop and co-ordinating membership. She has been summoned to the palace in June for a Royal Garden Party – in recognition of her services to charity. So, I won’t be the only one in a big hat in June! Enjoy…
Elizabeth Bevins Chief Executive Officer
Disclaimer:
The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.
Research Update Update on Research at Salford Royal Hospital “I was approached by the RSA to provide an update on recent and current research at Salford Royal (Hope) Hospital. Much of this research has been generously funded by the Association. I hope you find the article of interest. Salford Royal is one of the University of Manchester’s teaching hospitals, and for many years has been a referral centre for people with Raynaud’s phenomenon and scleroderma. As a result of this, many doctors and allied health professionals at Salford Royal have developed an interest in Raynaud’s and scleroderma. This has been very beneficial both for patient care and for collaborative research. For example, the rheumatology department has close links with dermatology, gastroenterology, respiratory medicine and hand surgery (as well as with several other specialties).
scleroderma. She is currently in the second year of her 3 year fellowship. 3.
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Our research programme aims to address many of the key unanswered questions about Raynaud’s and scleroderma, including underlying mechanisms (why do people develop Raynaud’s and scleroderma?), measurement (how can we measure disease, so that we can tell if a treatment is effective?), and treatment (how can we improve treatment?). Current research projects include the following: 1.
2.
Nailfold capillaroscopy. Many of you with Raynaud’s phenomenon or scleroderma will have had your nailfolds examined, as this can be helpful in diagnosis. At the nailfold it is possible (under the microscope) to see the very small blood vessels called capillaries. These are usually abnormal in scleroderma. At the University of Manchester we have been interested in developing high magnification capillaroscopy to allow us to measure these capillaries accurately, and see how they change over time. We have developed special computer software to do this. We are currently validating these measurement techniques, in a project funded by the Association. Our aim is to improve diagnostic accuracy of capillaroscopy, and to be able to assess changes in capillaries in response to different treatments. Nutrition. Many people with scleroderma have problems with nutrition, and we need to understand more about what causes these problems and how best to treat them. Dr Liz Harrison is a Clinical Research Fellow funded by the Association, examining nutritional problems in
5.
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Calcinosis. Why do many people with scleroderma develop calciumcontaining lumps beneath their skin? This question is being addressed by Dr Claire Lydon, Professor Richard Winpenny and Professor Paul O’Brien from the School of Chemistry, University of Manchester. This work is going well and Claire is currently looking at the composition of calcinosis lumps (kindly donated by patients). The ultimate aim is to see whether in the future it might be possible to dissolve them in some way. Again, this work is being funded by the Association. Treatment of telangiectases. Telangiectases are the red spots which occur in the skin (especially the face) of people with scleroderma. They can be very distressing, and this was confirmed by the results of a recent study sponsored by the Association: people with telangiectases had higher levels of ‘body image dissatisfaction’ than those without. This is very useful information, because it confirms that it is well worthwhile finding effective treatments. Laser therapy and intense pulsed light (IPL) therapy can both be effective, as we have shown in a recently completed study. Measuring blood flow in the fingers. Dr Andrea Murray, a physicist, is examining different ways of measuring finger blood flow. She is studying some very new methods as well as some more establised techniques, such as thermography which measures surface temperature. If we can measure finger blood flow accurately, then this will make it easier to develop new treatments for Raynaud’s. Treatment studies. One of the main treatment studies which we are currently taking part in is ESOS (European Scleroderma Observational Study). This is a collaborative study across 50 centres, most of them in Europe and several in the UK, examining treatment of early diffuse scleroderma. The study is well underway and over 200 patients have been recruited. We also take part in other studies co-ordinated by the UK Scleroderma Study Group, which is a group of doctors and scientists interested in scleroderma, chaired by Professor Denton, Royal Free Hospital.
I hope this has given you some flavour of our current research projects. As always, at Salford Royal we are very grateful to members of the Association for all their support of our research, and to all those who have given up their time to participate in these projects. This is very much appreciated.
Some of the members of the Scleroderma Research Team at Salford Royal are pictured below”.
Prof Ariane Herrick
From left: Tonia Moore, Graham Dinsdale, Jo Manning, Diane Clarke, Andrea Murray and Paul New
High magnification nailfold capillaroscopy. The capillaries can be seen on the screen on the right.
Patient having thermography scan
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DeSScipher The DeSScipher Project “To decipher the optimal management of Systemic Sclerosis”
On April 1st 2013 the observational trials of the international EUfunded research project “DeSScipher” began. It is currently the largest research project ever for systemic sclerosis.
About Systemic Sclerosis (SSc) SSc is a prototypic disease characterized by autoimmunity, fibrosis and vasculopathy. Among autoimmune rheumatic diseases, SSc is one of the most incapacitating and lifethreatening entities and associated with a high loss of life expectancy. With a prevalence from approximately 7/million to 489/million of the general population, SSc is an orphan disease. Aside from the clinically prominent thickening of the skin and the development of digital ulcers, it is also a multi-organ disease affecting the connective tissue of the skin and almost all internal organs, driven by alterations of both the immune system and the microvasculature. The juvenile-onset form is rarer than the adultonset form and less than 5% of SSc patients develop the disease in childhood, usually around 9 years of age. In contrast to the majority of other rheumatic and immunologic diseases, therapeutic options for SSc patients are much more limited, and neither truly disease-modifying drugs nor orphan drugs are available at present.
What is the DeSScipher Project? DeSScipher is the short form for the project title “To decipher the optimal management of systemic sclerosis”. The aim of this EUfunded international FP7 research programme project is to improve clinical practice in the management of systemic sclerosis, for which thus far only off-label treatments are available. Over a three-year period, building upon the expertise of an established, pan-European, multidisciplinary and experienced consortium combining physicians, biostatisticians and biologists with long-standing expertise in the field of SSc (the EULAR-based EUSTAR group), DeSScipher will provide a systematic, integrated approach to the disease. This approach is primarily based on five observational trials, which will be conducted over a period of at least 2 years. These observational studies are designed to cover different evolutionary phases of the disease from early functionally relevant manifestations such as digital ulcers (observational trial 1) and hand arthritis (observational trial 2), to more severe organ manifestations such as interstitial lung disease (observational trial 3), pulmonary hypertension (observational trial 4), and severe heart disease (observational trial 5).
How will the project be conducted? The project will use observational studies to investigate the effects of treatment in the real-life care of patients by monitoring the disease and its organ-manifestations very closely but without exerting an active influence on the treatment. The patients stay
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on their individual medication in routine clinical practice, and this medication is only changed according to the patients` individual medical needs but not for the purpose of participating in the observational trial.
The Project’s objectives are: •
To improve clinical practice in the management of SSc for both adult and juvenile patients
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To facilitate earlier detection and prevention of SSc and its organ manifestations and subsequently initiate disease- or organ-specific treatment
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To improve both quality of life and morbidity/mortality in SSc by addressing functional impairments caused by digital ulcers and hand arthritis as well as life-threatening organ complications due to interstitial lung disease, pulmonary hypertension and severe heart disease
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To develop and validate a reliable algorithm for detecting organ manifestations of SSc at an early stage in adult and juvenile patients at risk
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To compare outcomes of prevention and treatment regimens in SSc to define appropriate outcome measures for SSc trials
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To evaluate the efficacy and safety of off-label treatments currently used to target the main disabling and life threatening organ manifestations of SSc
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To contribute actively to the development and rapid dissemination of national, European and international guidelines for the diagnosis and management of adult and juvenile SSc
What is the role of the Federation of European Scleroderma Associations (FESCA) in the project? The Federation of European Scleroderma Associations aisbl. (FESCA) is one of the main partners in this project. It is an umbrella group of 23 national scleroderma patient support and advocacy organisations including the RSA, in 18 European countries. Its mission is to provide information to people with SSc, increase awareness on an international level, and advocate for equitable treatments for people with SSc throughout Europe. FESCA facilitates collaboration among national associations to share ideas and projects, and works towards the evolution of a political, social, and medical environment that facilitates the achievement of the FESCA vision (www.fesca-scleroderma.eu). FESCA as an ‘umbrella’ patient organisation operates through
World Congress 2014 Save the Dates 6-8 February 2014
All Roads Lead to Rome!
regular involvement of patients and their relatives in many formats, including the international World Scleroderma Congress and the EUSTAR training course. The role of FESCA in DeSScipher is to encourage the active involvement of policy-makers. Working with doctors to secure earlier diagnosis and better treatments, FESCA will also contribute to creating greater awareness of SSc, so that those who suffer from it can access proper and equitable care. Since SSc is a prototypic disease for autoimmunity, vasculopathy, and fibrosis, patients with related diseases will also benefit.
Participation in the DeSScipher project The DeSScipher consortium comprises 14 partners, including FESCA and in the UK, University College London and the University of Leeds. DeSScipher partner centres, EUSTAR (www.eustar.org) centres and all other SSc patient care centres can participate. If a centre has not already part of DeSScipher, and as a patient you wish to participate, please ask your centre if they will consider joining the project. Anyone wishing to contact the coordinators of DeSScipher directly, please email desscipher@kerckhoff.med.uni-giessen.de
Keep up to date with the DeSScipher project through the website www.desscipher.eu
The Third World Systemic Sclerosis Congress is to be held in Rome in February 2014, when Rome is golden and the north is still under the canopy of white winter. Two concurrent scleroderma congresses will run from 1 pm on February 6th until 3 pm on February 8th. One will be for the medics, with workshops beforehand for doctors wishing to have hands-on sessions with experts and patients. The other will be for people who have scleroderma. The event will, in fact, be two congresses in one, the patient congress addressed by many of the same senior rheumatology consultants and other health professionals who are lecturing at the medical congress. Attending the scientific sessions will be all those doctors who have a special interest in systemic sclerosis and want to learn more about how to diagnose and treat the manifestations of this rare, very severe disease. The patient congress will have interactive sessions at which the world’s top consultants will answer questions and give key information. Lectures will be built around patients’ chief areas of concern. The congress will also provide a wonderful opportunity to network with people from around the globe who have the same disease, and to discover the coping mechanisms of other cultures. Registration to the congress is subsidised for patients, and all meetings take place in Rome’s Ergive Palace Hotel and Conference Center, in which you can also book your rooms to stay if you wish. It is a location often used by the Italian government to host congresses. All are warmly welcomed to the Opening Ceremonies and Lectures, and other social events that will take place to celebrate the world congress. Best of all, Rome lifts the spirits, especially during the winter, and it is never difficult to persuade a companion to travel with you when Rome is your destination, for, as they say, all roads lead to Rome. If you are interested in booking a place, email info@raynauds.org.uk with ‘RSA World Congress Interest’ in the subject line or write to The Raynaud’s & Scleroderma Association, 112 Crewe Road Alsager ST7 2JA . We will let you know what to do next.
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In Memoriam Farewell to Linda Stratford Linda Stratford’s life had held such promise as a young sportswoman. A member of the Aldershot, Farnham and District Athletics Club, her exceptional athletic abilities and javelin skills were recognised when she was invited by the British Amateur Athletic Board to become a member of the prestigious Apollo national javelin training squad. Linda was one of the top javelin throwers in the country alongside Tessa Sanderson and Fatima Whitbread in the 70’s and 80’s. The skills, courage and tenacity with which Linda had pursued her sporting career were diverted to managing her life with scleroderma. She remained full of praise for consultants and staff at the Royal Free and the Brompton, as well as her local hospital. Sadly, Linda’s illness had a debilitating impact on her life after she was diagnosed in the 1970’s. Linda died in March last year and left a substantial sum for the RSA to use to raise greater awareness of autoimmune diseases, namely Raynaud’s and scleroderma, in her name. We are truly grateful for Linda’s generosity and will ensure her legacy is used to commemorate her personal battle in the way she would wish. Thank you, Linda, on behalf of all who share your vision. We are also thankful to Kay Irons, Linda’s cousin, for allowing us to commemorate and celebrate her life by writing about her story in Hot News.
Tribute to Mavis from Anne Mawdsley Members who regularly attend our Annual Conference will have got to know a lovely lady, Mavis Stevenson (pictured below) who joined us every year with her husband John. Sadly, Mavis passed away in February and will be greatly missed for her constant smile, in spite of the many problems which she fought with great courage over many years. Friends and relatives donated £1,903.75 (excluding Gift Aid donations) in Mavis’s memory, towards the Cool Million, for which we are most appreciative. At this point I would like to thank everyone who has helped in this way in memory of loved ones and I can assure you that donations such as this certainly make a big difference to research funding, which is a positive way of helping others in the future.
Every patient’s experience and journey with Raynaud’s and/or scleroderma is different and there is so much more we know about these conditions than even a decade ago, ensuring those diagnosed today will manage their disease more effectively and enjoy more active lives.
MEET THE WHOLE TEAM! Chief Executive Elizabeth Bevins President Prof. Dame Carol Black DBE Vice President Prof Chris Denton PhD FRCP Trustees Barry Hicks Joanna Kaddish Beverley Myers Professor Jeremy Pearson Professor David Scott
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Patrons Sharron Davies MBE Roger Jefcoate CBE DL 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. A Silman Dr. D Veale
Staff Anne Mawdsley MBE Karen Littley Helen Teal Sam Wilkinson Lucy Meek Emma Craddock Volunteers Neill Adams Ellie O’Neill Nicki Whitehill
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 Charity Reg No. 326306 VAT Reg No. 159099076
HealthUnlocked Welcome to the RSA HealthUnlocked community! This free resource connects you with other people affected by Raynaud’s and scleroderma: to help you learn from them, share your own wisdom and support each other. A quick guide to get the most out of the site: 1. Blogs – write about your experiences, positive and negative, and people will relate to it. Through their comments they will offer words of support, sometimes disagreement, or ideas on what you could try to alter a particular situation or feeling. You can read and comment on other people’s blogs too. Our RSA blog lets us tell you what we’re doing and new resources we produce. Also when we need your help for campaigns, fundraising and awareness raising.
For any technical queries or questions, get in touch with HealthUnlocked via the Feedback button at the top right (they like compliments too!) Any questions relating to Raynaud's, scleroderma or RSA can be put on the site or sent as a private message to the RSA team. Your information is really valuable and we can’t wait to see you participate in this great community!
Join now by visiting http://raynauds.healthunlocked.com/
2. Questions – confused about what a symptom might reveal? Unsure of how to access a particular service? Don’t know how to manage the impact of your condition on your family? Ask other members and see what ideas they have. Use your own experience to answer other people’s questions too. 3. Hospitals – search for your local hospital and discover how others have found the service there. Do add your own review too. 4. Tags – these are the keywords you’re writing about. In the form where you post your Questions and Blogs there’s a box for tags. Ones that have been used before will come up automatically (e.g. Raynaud's). Tags help find useful information that’s been posted already and you can use tags (and the search box) to find answers to your questions. 5. Polls – interesting questions you can vote and comment on; they help us understand what matters to you. 6. Messages – you can contact members privately if there’s information or a question you’d like to ask discreetly. Remember, this is a safe space for everyone to share so please follow our protocol and guidelines. http://raynauds.healthunlocked.com/guidelines/groupblog.html Content on this site does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. Views expressed are those of individuals and not of the Raynaud's & Scleroderma Association.
One of the many articles receiving press coverage during Awareness Month in February.
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Doc Spot My doctor tells me I have Raynaud's, but only my toes especially appear to be affected. They are cold all the time, with the feeling that I have cramp in them. I take FRCP Adalat LA 20mg once a day, and even Consultant Rheumatologist, wearing two pairs of socks does not help. Royal Free London, NHS Foundation Trust This condition has only come on over the last 2 months and blood sugars are ranging in the 5.0 - 5.5 area. Although I take Ramipril my blood pressure is fairly stable. I am 47 and have had Raynaud’s since my of the symptoms of low iron levels is that Have you any suggestions for teens with no problems and easily you feel the cold more. I am just wondering improvement? managed with normal gloves so no one if I felt the cold more and had more ever really noticed and I did not have to frequent attacks when my iron levels were Raynaud’s can affect any of the extremities change my lifestyle to accommodate it. low or whether it was just a coincidence? including the hands, feet, ears etc. However, last year I had a heart attack and However, usually the hands and fingers are have been put on several drugs for life - Although there is no clear association affected more than the feet. It is important Ramipril plus aspirin, fish oil and between low iron levels and Raynaud’s that any other cause for a poor circulation atorvastatin. My doctor and I believe that it phenomenon it is desirable for good is excluded and this can be done with quite is the Ramipril which has taken my general health to maintain adequate iron simple tests such as a Doppler scan or by Raynaud’s to a whole new level never levels as this is important for heart and measuring the blood pressure in the arm previously experienced and it is now muscle function as well as maintaining and at the ankle and calculating a ratio proving to be quite restrictive to my lifestyle healthy hair and skin. If the low iron levels termed the ABPI (ankle brachial pressure and I am concerned about unnecessary are associated with anaemia then index). This is low if there are problems long term damage to vessels due to Raynaud’s can be worsened although with the large arteries in the legs. frequency and extent. As I am surely not usually only if the anaemia is very marked. Raynaud’s can be treated with a number of the only Raynaud’s sufferer to be on life It is important for you to discuss with your vasodilator drugs such as adalat or long protective heart medication, there doctor why you might have low iron as it losartan and you should discuss this with must be a recognised and effective may be necessary to have further tests. your doctor. alternative to Ramipril for us? My doctor has failed to identify one. I have had Raynaud’s since I had cancer I wonder how many other people with Although some of the drugs that are treatment. I am trying to find out any Raynaud’s have noticed the correlation recommended after a heart attack can information about the connection. All I have between a dip in blood sugar/hunger and aggravate Raynaud’s it would be unusual been able to find are simple quotes that the onset of an attack? For me it is very for this to be due to Ramipril, which is an "Raynaud’s is linked to some Chemo”. I definite. ACE inhibitor that can improve the had 4 different types of Chemo. I will have efficiency of the heart and also help to 4, 5 or 6 episodes a day in the winter and Your observation is very interesting and control high blood pressure. Likewise some are quite uncomfortable. I have also certainly makes sense as when you are both aspirin, which reduces the risk of had episodes in the summer when it wasn't hungry it is possible that the nerves that blood clot (thrombosis) and atorvastatin even cold. Any help with this that would be make blood vessels go into spasm are that reduces cholesterol levels have often most appreciated. increased, as outlined below, however it is been reported to improve Raynaud’s not a common symptom. The blood rather than make it worse. Sometimes Some forms of cancer chemotherapy can hormone adrenaline is produced by the treatment with a beta blocker such as worsen or aggravate Raynaud’s body when blood sugar is low, as it can bisoprolol is started after a heart attack phenomenon; the mechanism is unclear help to correct this and also stimulate the and this class of drug can certainly worsen but may relate to changes in the lining body to find food. Adrenaline also causes Raynaud’s. Overall, it is important to cells of the blood vessel that usually blood vessel spasm, and so this might minimise the risk of heart problems but produce substances to open up blood explain a link with Raynaud’s. there are some similar drugs in the same flow. Usually any worsening will be class that might be tried such as Quinapril temporary and improve after a few months and you should discuss that with your but sometimes treatments for Raynaud’s Can Raynaud's cause your blood pressure doctors. may need to be introduced or increased. It to rise? is important to have the best chemotherapy for your cancer and so Raynaud’s treatments can lower blood I have recently been told that I have low usually the worsening of Raynaud’s pressure as they often dilate blood vessels iron levels and I am wondering if there is a cannot be avoided. and can be used to treat high blood link between low iron levels and Raynaud's pressure but there is no evidence that e.g. more frequent Raynaud's attacks when Raynaud's can cause a rise in blood iron levels are lower? This is based from pressure. personal observation and it is just If you have a question you would something I've been wondering about. like Professor Chris Denton to answer, From what I have read, I can see that one please send to Head Office
Professor Chris Denton
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Self Management NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free London
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Karen Walker Newcastle upon Tyne
0191 223 1503
Audrey Hamilton Belfast
02890 561 310
Paula White & Julie Ingall Portsmouth
02392 286 935
Jayne McDermott Sheffield
0114 2713 086 (option 3)
Lucy Pigram Brompton
077588 943 175
Steve McSwiggan Dundee (Available Mon, Tues & Wed Mornings)
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.
Please note we have a new contact in the North West, based in Southport. Contact Nicki Whitehill on 01704 550580 or email nicola.whitehill@hotmail.co.uk
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Did you know? Common Cold Remedies Pseudo-ephedrine is a decongestant which works by constricting blood vessels and reducing swelling in the sinuses. However, like all drugs it is not intelligent and cannot target an area. Small amounts of ephedrine are used in cold remedies because it relaxes the airways and makes breathing easier and is available over the counter. Always read the label and speak to your doctor/pharmacist before taking as he/she can give advice as to whether a small amount of ephedrine will affect your Raynaud’s.
Grapefruit and Blood Pressure Drugs Grapefruit slows your body's CYP34A enzyme, a protein that metabolizes drugs. You end up with more medication in your system than intended. This increases your risk for side effects. If nifediine - or other channel blockers - become elevated in your bloodstream, your blood pressure may drop to dangerous levels. Your heart may stop. Drinking as little as one glass of grapefruit with nifedipine increases your risk of serious side effects. Read more: http://www.livestrong.com/article/517759-what-are-theeffects-of-grapefruit-juice-while-taking-nifedipine/#ixzz2PrZsfQlK
Dental charges • • •
The dental charge payable for a band one course of treatment will increase by 50p from £17.50 to £18.00. The dental charge for a band 2 course of treatment will increase by £1.00 from £48.00 to £49.00. The charge for a band 3 course of treatment will increase by £5.00 from £209.00. These charges apply from 1 April 2013
If you have dental problems related to scleroderma, such as a small mouth, you can ask your dentist to refer you to a dental hospital for treatment. The RSA has a dental leaflet available for patients and one for dentists.
Prescription Charges The NHS prescription charges in England increased by 20p from £7.65 to £7.85 for each quantity of a drug or appliance from 1 April 2013. However, the cost of a prescription prepayment certificate (PPC) will remain at £29.10 for a 3 month certificate. The cost of the annual certificate will remain at £104.00. PPCs offer savings for those needing 4 or more items in 3 months or 14 or more items in one year. PPCs are available by 10 monthly direct debit instalment payments. The prescription prepayment certificates allow anyone to obtain all the prescriptions they need for £2.00 per week. In England, around 90 per cent of prescription items are dispensed free. You can get free NHS prescriptions if, at the time the prescription is dispensed, you: * are 60 or over or under 16 * are 16-18 and in full-time education * are pregnant or have had a baby in the previous 12 months and have a valid maternity exemption certificate (MatEx) * have a specified medical condition and have a valid medical exemption certificate (MedEx) * have a continuing physical disability that prevents you from going out without help from another person and have a valid MedEx * hold a valid war pension exemption certificate and the prescription is for your accepted disability * are an NHS inpatient
You are also entitled to free prescriptions if you or your partner (including civil partners) are named on, or are entitled to, an NHS tax credit exemption certificate or a valid HC2 certificate (full help with health costs), or you receive either: Income Support, Income-based Jobseeker’s Allowance, Income-related Employment and Support Allowance or Pension Credit Guarantee Credit or Universal Credit.
Disabled Persons Railcard If you have the higher rate of DLA mobility you can qualify for a Disabled Persons Railcard. If you have several hospital appointments and have far to travel by train it is certainly worth looking into getting one.
Costs and discounts The railcard costs £20.00 for one year and £54.00 for three years. Once you have the card, you are entitled to a third off advance, offpeak and anytime train fares. You don't have to travel with a companion but if you do, they'll get the same discount as well! There are also other discounts associated with the railcard, For further information visit: www.disabledpersons-railcard.co.uk or call in at your local railway station. If you have mobility problems when travelling by train do make use of the Travel Care Service which is available. I find the one at Euston station is brilliant. A buggy meets me off the train and takes me to the taxi rank or concourse, the same on the return journey - the buggy takes you right to your carriage and with the trains (particularly Virgin) getting longer and longer it is a real bonus and is a free service. You do not need to have a disabled railcard to use this service. Just call 08457443366 and give details of your journey, preferably with 48 hours notice.
Giving Blood If you have difficulty giving blood you should drink plenty of water prior to a blood test. A member who had experienced great difficulty with nursing staff finding a suitable vein, called to say it had worked and her blood was taken with no problem.
New Website I recently discovered a website (www.disabledgo.com) which appears to be very helpful, especially if you are planning a trip out. DisabledGo provides online access guides in a great deal of detail. They cover any venue you would access as a member of the public - cinemas, hotels, hospitals, colleges, sports grounds, restaurants, council offices, parks, historic land marks, tourist attractions - the list goes on and on.
Personal message from Anne Over the past 30 years it has been my pleasure to make friends with people who I would never have known had it not been for the RSA. We have shared experiences, good and bad and been there for each other. You have all enriched my life in many ways. Since February, it has been necessary for me to work from home due to health problems but I have been able to keep in touch with members by email (anne@raynauds.org.uk). You can email me your phone number if you would like to chat. If you would like to correspond with me personally, it would be helpful to the team in the RSA office if you let them know this in any letters that you send. Alternatively ring the office on 01270 872776, leave your telephone number and say you would like me to call you.
Anne Mawdsley Welfare Officer
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111 Emergency Number NHS 111 is a new service that's being launched nationally in August 2013 to make it easier for you to access local NHS healthcare services. You can call 111 when you need medical help fast but it’s not a 999 emergency. NHS 111 is a fast and easy way to get the right help, whatever the time. Pilots for this new scheme are taking place across the UK.
a community nurse, an emergency dentist or a late-opening chemist.
NHS 111 is available 24 hours a day, 365 days a year. Calls are free from landlines and mobile phones.
If NHS 111 advisers think you need an ambulance, they will immediately arrange for one to be sent to you.
When to use it
Calls to 111 are recorded. All calls and the records created are maintained securely, and will only be shared with others directly involved with your care.
You should use the NHS 111 service if you urgently need medical help or advice but it's not a life-threatening situation.
Call 111 if: • • • •
you need medical help fast but it's not a 999 emergency you think you need to go to A&E or need another NHS urgent care service you don't know who to call or you don't have a GP to call you need health information or reassurance about what to do next
Where possible, the NHS 111 team will book you an appointment or transfer you directly to the people you need to speak to.
For more information visit http://www.nhs.uk/NHSEngland/AboutNHSserv ices/Emergencyandurgentcareservices
For less urgent health needs, contact your GP or local pharmacist in the usual way. If a health professional has given you a specific phone number to call when you are concerned about your condition, continue to use that number. For immediate, life-threatening emergencies, continue to call 999.
How does it work? The NHS 111 service is staffed by a team of fully trained advisers, supported by experienced nurses. They will ask you questions to assess your symptoms, then give you the healthcare advice you need or direct you straightaway to the local service that can help you best. That could be A&E, an out-of-hours doctor, an urgent care centre or a walk-in centre,
Sometimes life can be incredibly tough and you feel like you just want to talk to somebody - anytime of the day or night. The Samaritans are available 24 hours a day, 365 days a year. You don’t have to be suicidal.
Tel: 08457 909090 (UK) or 1850 60 90 90* (ROI) Sometimes it can feel difficult to pick up the telephone. Writing down your thoughts and feelings can help you better understand them.
Volunteers answer approximately 600 emails a day to jo@samaritans.org 11
Fundraising The Mohican Cub Pack, who are based near to our head office, recently raised over £275 for the Raynaud’s & Scleroderma Association. Not only did they have to fill up Smartie tubes which were kindly donated by the local Sainsbury’s store, cash had to be earned by the cubs and not just given to them. The creative cubs came up with several ways to ‘earn’ money for their Smartie tubes which included making and selling biscuits, selling quiz sheets and helping out at home. Pictured left on the back row is Liz Bevins, Chief Executive and Anne Mawdsley, Welfare Officer (in centre of picture) from the Raynaud’s & Scleroderma Association with cubs and leaders from the Mohican Cub Pack.
Hannah Pettifer ran the Reading Half Marathon and raised £250
Tom Rynsard, George Davies, Emyr Davies, Iris McMillan, Duncan Mulgrew with Ron McMillan (at the back) proudly wearing their T-shirts during one of their fundraising events.
Allsorts of FUNraisers Fundraiser
Event
Amount
Burton on Trent Support Group
Various
£1,000
Sheila Moore
Various
£106
Margaret McKenzie
Various
£100
Alison Woodward
Christmas Fair
£1,250
R Beaver
Christmas Raffle
£142
Rose Bevan
Bingo & Shopping Mall
£353
Shirley & Jon Lynch
Tea and Coffee Morning
£115
Kate Norbury
Talk
£50
Kinderton’s Accident Management in Crewe handed over a cheque for £250 to Liz Bevins, Chief Executive at the RSA. Julia Brindley and her father, Patrick Crowe, proudly handed over the cheque.
A big thank you to all our fundraisers! 12
Fundraising Jean Baker has sent in these two lovely pictures which could inspire cubs and brownies across the UK to raise funds for the RSA. The 1st Hatch Warren in Basingstoke, led by Brown Owl Samantha Wheldon, encourages the cubs to raise funds so that they can buy the wool for Jean to knit mittens. Jean sends the mittens to our head office which we then sell. We think this is a fabulous way of the younger and older generations working together for a worthy cause. Jean is pictured above surrounded by her current stockpile of knitted mittens which found their way to our office and also a delightful picture of her on the right when she was a Canadian Brownie Guide.
Sporty FUNraisers Fundraiser
Event
Amount
Victoria Riera
BUPA Great South Run
£113
Alex Reid
BUPA Great South Run
£400
Nick Keir
BUPA Great North Run
£135
Keith Grant
Fraserburgh Half Marathon
£735
Alan Gould
10k survival of the fittest run
£343
Emma Finney
Climbed Mt Kilamanjaro
£896
Rhiannon Kitchen (and her boyfriend)
Cardiff Half Marathon
£1,700
Scotty Appleton
Muay Thai Boxing Fight
£62
Billy Khan
Cricket match
£281
Super Sue walks for sister I have an appalling sense of direction and I'm not a particularly seasoned walker, but despite that, I began walking the 630 mile South West Coast Path on 4 June 2011 in Minehead, Somerset and finished on 7 August 2011 in Poole, Dorset. Every day I carried a rucksack that weighed on average 15kg, which included basic provisions such as a sleeping bag, tent and cooking gear. I walked nearly a hundred extra miles to and from campsites and was joined only briefly by friends and family.
Peter McDonald raised £550 by people liking his Damp Decay service and his son, Jim, is pictured here jubilant after completing the London Marathon and raising £1,200. These guys raise money for their wife/ mother who has the condition.
The Ship Inn have donated a further £55. Their ongoing support over the years is very much appreciated. Thank You
Why? For my sister, Caroline. She was diagnosed with Raynaud's in Autumn 2009 and the following Spring, with a rare condition called scleroderma. My aim was three fold: 1) To complete the 630 mile walk 2) To talk to as many people as possible about Raynaud's and scleroderma and how they have affected my sister's life 3) To raise on average £10 per mile of the South West Coast Path for research into both conditions. Sue Edser has raised £9108.41 for the RSA by completing this walk and other fundraising activities that she has been involved in. Very well done Sue!
Rachel Allen raised £165 for running the London Marathon
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Amy’s Story Life of a Young Raynaud’s Sufferer - My Story I am a young girl of 17 who is sharing my story of how I have coped with Primary Raynaud’s over the past few years on behalf of all young Raynaud’s sufferers. I think it is so important for young people to share their experiences especially as it can be so hard to deal with alone. In 2009, I started to diet and exercise more; as a result I lost a couple of stone in weight. I then started to notice my first set of symptoms of Raynaud’s. I constantly felt cold and was beginning to feel numbness in my hands and feet. The only way I would feel better was to sit in the bath but even then my feet would turn black, white and purple. I did not know what it was and it started to worry me. School was a real struggle as my feet were so painful and it hurt to walk around all day. I would never know what to say to people when they asked why my hands looked so ‘weird’. I began to wear long sleeved thermal tops that would cover my hands as much as possible. The pain was excruciating and I dreaded every day. The pain was getting worse and I really started to struggle. I went to my GP who didn’t see anything wrong with me. I was so upset that they couldn’t see what I was seeing. It took a few times of me going to the doctors before they finally referred me to a Rheumatologist in children’s outpatients. I had to endure blood tests to rule out any other causes and in the summer of 2010 I was told to keep a diary of symptoms. Looking back at what I wrote in the diary, I was really shocked to see that I was struggling so badly. I wrote “my hands and feet are throbbing’’ ‘’my knuckles are purple’’ ‘’my hands are so painful’’ ‘’my finger is swollen’’ ‘’writing is such a struggle’’ ‘’my legs are all blotchy’’ ‘’I feel so weak’’ ‘’I am struggling more than ever today, and can’t even open a bottle’’. The symptoms were endless and what worried me even more was that this was only in the summer! It felt like years before I was finally diagnosed. The hospital sent a letter to my GP explaining the condition and I was happy to have finally got some answers. After a few more appointments at the hospital I was given medication! I smiled from ear to ear and could not wait to try it out. I was given GTN patches (glyceryl trinitrate) which slowly open my blood vessels to allow better circulation. I started off wearing 2.5mg of the patch and now I have to wear 10mg for it to work efficiently. Although there are side effects of migraines and dizziness, they have helped me so much. I continued to go to the hospital because they found a problem with my knee as well as lacking stamina in my hands. I was also told that I was hyper mobile and very weak. He said that physiotherapy was the best option in order for me to be able to cope better. He gave me a leaflet about the RSA and I decided to order some silver socks and gloves which have benefitted me so much. Recently, I went to my hospital appointment where they checked my circulation and strength. They were so happy with my progress and the doctor told me how proud he was with how far I have come. “A little star” he exclaimed. I was ecstatic that after so long of suffering I had finally found medication that made it
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bearable. They said that I am really good at coping with it and I am capable of controlling it through the use of painkillers and patches. I really thought that this day would never come... I was so relieved. My hard work and not giving up really paid off! Of course I still have really down days where I ask myself why I was given this, and why I have to try and cope alone. With the recent cold weather and the amount of stress due to my A-level exams, I have been in so much pain and it really has been hard. When my friends ask me what’s wrong I try to explain to them, but it is hard for them to understand because Raynaud’s is not well known and I “don’t look sick”. I spend most of my time at the stables but even there I had to write a letter explaining to them my condition and they really appreciated me telling them. It has made things so much easier because they understand why I cannot over exert myself or why I need to be sat with a heater. I receive extra time in my exams and they make sure I am sat somewhere warm to prevent my hands going numb. This is a prime example to why people should not hide their pain or what they are going through. Despite whether they fully understand or not, they will always do their best to support you and the more they know, the more they can do exactly that. I am so glad I came across the RSA because it has helped me to keep in contact with people just like me, who share the same pain and experiences I do. Many people may be looked upon as being weak or lazy, but if they understood what we have to deal with everyday of our lives, they would see we are people with incredible courage, strength and perseverance.
Amy Colson
Children Survey Information for Children Survey Should there be information and education available for children whose parents or grandparents have chronic rheumatic conditions? My name is Elizabeth Hale and I would like to give you some information about a research project that I am carrying out and I would like to invite you to take part. The research team comprises of myself, Professor George Kitas from The Dudley Group of Hospitals NHS Trust, Professor Panos Vostanis and Dr Michelle O’Reilly from the University of Leicester.
Will the information I give be kept confidential? The questionnaire does not ask you for your name, so you can reply anonymously. Some of the questions ask you to write an answer in your own words. When we write a report on this research project we may quote some of these statements. As we do not ask you for your name we will do everything we can to protect your confidentiality. If you do mention someone or a place by name, we will change this or delete it so that it will be very difficult for anyone to identify you.
The research is being funded by Arthritis Research UK and The Dudley Group NHS Foundation Trust Charitable Fund. The survey should only take about 5 to 10 minutes to complete and is completely confidential.
If you would like to request any further information or talk to the researcher by telephone, please call:
Follow the link here to complete the survey
Ms Elizabeth Hale Department of Rheumatology, Clinical Research Unit, North Wing, The Dudley group of Hospitals NHS Foundation Trust, Russells Hall Hospital, Dudley DY1 2HQ
www.surveymonkey.com/s/BJNCRPX
What is the research about? People with long-term rheumatic conditions, like Raynauds disease and Scleroderma, are often given leaflets to read about their condition. These leaflets try to answer some of the questions they, and their family, might ask. There are also leaflets for the partners or carers of patients. There are also reputable websites that provide this information.
Tel: 01384 456111 extension 3722 (an answer machine is available) OR Mr Ben Watkins: 01384 456111 extension 1890.
At the moment there is no information available specifically for the children or grandchildren of people who have longterm rheumatic conditions. We are carrying out a research project to find out if people think it would be a good idea to provide this information for children, written in a way that they would understand. We would also like to know the best way to provide this information, and when. The Raynaud’s & Scleroderma Association have very kindly agreed to help us with our project by making our questionnaire available to their members. We would like to ask you for a few minutes of your time (about 5 to 10 minutes) to complete this short questionnaire which asks you for your views.
Please do not contact the Raynaud's & Scleroderma Association as they will not be able to answer any questions about this research project.
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June 29
International Scleroderma Day The great Swiss artist Paul Klee died in 1940 of scleroderma, which strongly influenced his creative art. Scleroderma is the name given to a group of rare conditions that can damage the skin, blood vessels, and internal organs. It has varied symptoms but early diagnosis and treatment can prevent the worst complications. The Federation of European Scleroderma Associations (FESCA aisbl) believes that people with scleroderma should have equal access to treatments. To find the events celebrating Scleroderma Day in your country, visit our website at www.fesca-scleroderma.eu or contact your local support group. National groups are listed on the FESCA aisbl website.
PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION
112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk Charity Reg. No. 326306
Raynaud's & Scleroderma Association Š Copyright 2013. All Rights Reserved.