L AT E S T N E W S • R E S E A R C H • P E R S O N A L S T O R I E S • P R O D U C T S
SCLERODERMA & RAYNAUD’S NEWS WINTER 2015
In this joint issue... International Scleroderma Conference - Doc Spot - How to manage fatigue MAGAZINE OF CHOICE FOR PEOPLE WITH SCLERODERMA AND RAYNAUD’S AND THEIR SUPPORTERS
Welcome! Dear all, A warm welcome to this special newsletter, a joint publication from the Raynaud’s & Scleroderma Association and The Scleroderma Society. Supporters of the respective organisations will have hopefully heard the exciting news that the two organisations will be merging into one new charity. Behind the scenes, we are working through the legal processes to enable this to happen. We are still operating as two separate entities while we are preparing the foundations of the new charity and finalising the legalities. We extend our continuing thanks and warmest gratitude to our fantastic supporters, fundraisers, volunteers, staff teams and trustees who all have important roles in the make-up of these two excellent charities. We wouldn’t be in the successful
positions we are in now without the dedication, time and efforts of so many individuals and we hope all our supporters will join with us as we venture into our new charity’s future and build on the foundations laid so strongly by all involved in the RSA and SS to date. Time has come around again for the next World Congress on Systemic Sclerosis; this will be the fourth, taking place in Portugal this February. Registration is open to all, including people with scleroderma, their families and friends; it is an opportunity to learn about the condition, hear from and meet people with scleroderma, medics and other healthcare professionals, sharing knowledge and experience on living with, and treating, different aspects of systemic sclerosis. There are more details on page 4,
please feel free to visit our website or contact us in the office if you have any further questions. Wishing you a joyful Christmas,
Susie Scleroderma Society Trustee
The Scleroderma Society is a registered charity: 286736
Dear Readers, We are galloping towards the end of the year again, past the autumn equinox to winter solstice and Christmas, looking towards Raynaud’s Awareness Month in February in the UK and onwards. “How much has changed in the past year” is a common phrase people use about their own lives, the fortunes, health and achievements of themselves, their own families and friends. It is also a relevant comment about the charity sector in
general and, much closer to home, the RSA in particular. You will see that this newsletter is the very first joint publication to include news from both the Raynaud’s and Scleroderma Association and the Scleroderma Society. Those of you who came to the joint conference in Manchester, or who were able to join us at the joint ‘international’ event in Cambridge on 1st August, will appreciate how much further along the road, in integrating our activities, the two charities have travelled in the last twelve months. Sue Farrington, Chief Executive of Scleroderma and Raynaud’s UK (SRUK), has kindly provided a feature on the exciting times ahead as we build up to the launch of SRUK in the start of Summer 2016. It is important for members and supporters of the charities to remember that we are all dedicated to increasing our ability to communicate with the community we continue to serve - and those in the health
sector who strive to help you manage your conditions – to help ensure we raise awareness of Raynaud’s and scleroderma and conditions associated with them. We are excited to be running a Christmas raffle. More information is on page 4. If you can help, we truly appreciate your support. Whether you are reading this issue online or have the magazine in your hand, we hope that you enjoy this bumper edition. The team and I want to send all of you our warmest wishes as everyone in the Raynaud's and scleroderma community looks forward to the benefits of a merged organisation as SRUK during 2016.
Elizabeth Bevins Chief Executive Officer
The Raynaud’s & Scleroderma Association is a registered charity: 326306
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SRUK update
Update from SRUK
of March 2016, with a more official launch in June 2016. Over the coming months I want to make sure that SRUK is in the best position to capitalise on the opportunities presented by the merger. Understanding your needs and what you expect of the new charity will be critical in shaping our services. To achieve this we need your help and involvement, so we’ll be asking you to get engaged at various stages throughout the process.
I’ve only been with SRUK for a couple of months, but already I’ve been struck by the incredible energy and commitment of members, volunteers, staff and the professional community. While I may be new, I know this commitment is not, and that over the last thirty years, countless individuals have given up their time to raise money and support friends and strangers alike with scleroderma and Raynaud’s. It’s this energy and commitment that I want us to build on. I want to make sure we get this right and we create a new organisation fit for purpose with a strong brand to raise our profile and increase awareness. I’m pleased to report that we’re making good progress with our plans to bring the two organisations together. This isn’t straightforward, by any means, and has involved a lot of work behind the scenes to finalise the legal and technical aspects of the merger, which we aim to complete by the beginning of November. We’re aiming to have SRUK’s strategy and brand ready, so that we can go live at the end
The first thing we’d like you to do is a short online survey, which should take around 10 minutes to complete. We’re running the survey online to keep costs down, but appreciate that some of you may not have access to this, so if you want to call us to share your thoughts, then please call 01270 872776. Following the survey we’ll share the key findings to get a sense as to whether the results resonate with you and what you think should be our core goals. During this transitional phase we’ll continue to provide the high quality service and support you’ve come to expect of both organisations and we’ll send you regular updates to let you know what’s happening and to address any queries. I look forward to working with you, building on the best of both current organisations, to ensure that everyone affected by scleroderma and Raynaud’s has the services and support they need.
Sue Farrington
Your membership with Scleroderma and Raynaud’s UK (SRUK) As a member of the Raynaud’s & Scleroderma Association (RSA)* and/or the Scleroderma Society you are automatically entitled to become a member of SRUK. At the end of January 2016 your data will be securely transferred to SRUK (all data will be handled in line with the Data Protection Act 1998). You will then be a member of SRUK and will begin receiving jointly agreed communications on behalf of SRUK, the RSA and the Scleroderma Society. SRUK will launch at the end of March 2016 and, from this point onwards, you will only receive communication and information from SRUK, as the RSA and Scleroderma Society will cease operation. The RSA and Scleroderma Society value your membership and support and we hope that it will continue as we form SRUK. SRUK will unite the RSA and Scleroderma Society membership to create a strong single voice for people with Raynaud’s and scleroderma. This is a very positive time for the Raynaud’s and scleroderma communities and we look forward to welcoming you to SRUK. If you do not wish to become a member of SRUK and have your existing data transferred to the new charity, please ensure you let us know before 31 December 2015. Please contact the charity (or charities) of which you are already a member, stating you wish to ‘opt out’.
SRUK Chief Executive
SRUK Key Milestones SRUK becomes the parent company of RSA and SSoc
IMPORTANT INFORMATION:
SRUK goes live
. Raynaud’s and Scleroderma Association 01270 872776 info@raynauds.org.uk
31st October 2015
31st March 2016
Shaping the new organisation = Integrate systems = Develop strategy = Create SRUK brand Keep up to date with the SRUK developments at http://sclerodermauk.org/sruk or www.raynauds.org.uk/sruk www.raynauds.org.uk
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June 2016 Official SRUK Launch
Scleroderma Society 020 7000 1925 info@sclerodermasociety.co.uk * If your membership with the RSA is due for renewal by 31 December 2015, the letter ‘U’ will be shown after your membership number on the front of the address label. RSA Membership details are on the reverse of the cover sheet. All ‘paid up’ members of the RSA will then automatically become SRUK members during 2016 with the merger of the charities.
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News
EULAR Sclero-ID On the 9th and 10th June, people with scleroderma (SSc) attended the first ScleroID meeting held in Rome. Some travelled to Rome and others took part by webinar/teleconference. Medical experts were also present but asked to sit on their hands and say as little as possible because the most important contributions were from those who have first-hand experience of living with the impact of scleroderma. After introductions, the program and purpose of the project was discussed at length, which is to develop and validate a brief, disease-specific, patient-driven, disease impact score for scientific and clinical use in patients with SSc. By the end
of the first day we had sixty-six health issues which had to eventually be broken down to a maximum of fifteen. The moderator and medical experts worked long into the night to put together any over-lapping issues before the work began to see which of the others could be broken down further. You probably won’t be surprised to hear this proved impossible due to the complexity of the disease; by the end of day two, I think we were down to twenty-three. This is a EULAR project and strict guidelines have to be met; thankfully we have a very experienced moderator in Turid Heiberg to guide us through the identification and grouping of the health dimensions.
The next step is to establish a web-based survey that will be sent randomly to people with SSc who will be asked to rank/prioritise according to their own experience. This is the beginning phase of the scleroderma disease impact score and the next face to face and telecon meeting will take place in June 2016. Meanwhile if you receive a survey, which should be around September, please complete it as your input will be invaluable to make this project a success. Reprinted from the FESCA mini-newsletter September 2015.
World Systemic Sclerosis Congress The 4th World Systemic Sclerosis Congress is being held between the 18th and 20th February 2016 in Lisbon. The program consists of interactive sessions, lectures and discussions between consultants and patients. Lectures will be given in English but translated into major audience languages. Experts will answer questions such as: What
are the options in treating SSc? Is the heart involved? Why is breathing so difficult? How can children with SSc learn to cope? Each session will feature at least one top specialist and one patient perspective. The patient congress will also include interactive exercises and breathing sessions, plus a round-table networking meeting for leaders of patient groups before the
congress, and plenty of networking opportunities during it. It only costs €35 to register, and lunch is included. A hotel rate has also been negotiated at €85 for a double. The deadline for registration is 31st January 2016. More information can be found at www.sscworldcongress.org or email ssc2016@aimgroup.eu
The Raynaud’s & Scleroderma Association is delighted to be running a Christmas raffle! The Christmas prizes are: Heat Holders hat and glove set £100 Best Western Hotel & Resturant voucher Heat Holders ladies slipper socks £30 to spend in the RSA shop Heat Holders mens socks A Snuggle Up blanket worth £24.99 12% silver fibre gloves Frankie & Benny’s voucher .....Amongst other prizes! So why not enter to stand a chance of winning a prize and being able to treat yourself, or a loved one, this Christmas? Not to mention help raising money for a vital cause! We have included some raffle tickets with this newsletter, for you to either buy yourself or to sell on. We appreciate you might not be able to sell these, however, we can save on postage costs by including tickets with your newsletter. As you can appreciate, being a small charity we need to save on costs wherever possible. If you cannot sell the tickets, please either pass them onto someone who can or recycle them. The tickets sell for £1 each. The buyer fills in their details on the
slip, and keeps the main part of the ticket. You post the stub, with the buyer’s information on, back to us with a cheque for the money, made payable to “RSA”. Don’t worry if you don’t manage to sell all the tickets, please just post whatever you manage to sell back to us. If you would like more tickets to sell on, please get in touch with head office and we would be delighted to post more out to you. All ticket stubs will be entered into the draw and the prizes will be drawn on 1st December 2015, so make sure you send in your tickets by the 30th November. Any tickets received after this date will not be able to go into the draw. We will contact all the winners directly.
Thank you to everyone who supports the raffle and more importantly, good luck!
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Raynaud’s Awareness Month
February 2016 marks Raynaud’s Awareness Month. As many of you know, Raynaud’s phenomenon is a very common condition that is estimated to affect over 10 million people in the UK, with 9 out of 10 sufferers being female. For some people, it is no more than a nuisance and can be very mild but for others it can also be much more severe, dramatically interfering with one’s daily life. If you suffer from Raynaud’s, or know someone who does, please don’t ignore it. Raynaud’s Awareness Month aims to spread information of this massively unheard of disease. Many Raynaud’s sufferers don’t go to their doctor as they aren’t even aware that there is a name for their condition. This is why we want to spread awareness and bring the condition to the attention of many. Can you help us to spread awareness? You may have noticed this newsletter contains two posters for Raynaud’s Awareness Month. We would be grateful if you could place them in your local community, be it your doctor’s waiting room, school notice board or work place, anywhere that might grab someone’s attention. Throughout the month of February, we are encouraging our supporters to ‘LOVE your GLOVES’ and get involved in some fun activities as well as raise vital funds for research into understanding the condition and finding new treatments. We have enclosed a flyer that might inspire you with some fundraising ideas within this theme. You can donate by texting COLD16 £5 to 70070. Keep an eye on our social media pages for more information on how to get involved. Thank you for your support.
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COLD16
Tell Us Your Story Can you help us with press coverage? If you have had a difficult journey, have had an 'awkward' experience or just love sharing, please get in touch and tell us about it. We are looking for people with the condition to feature in local papers, magazines and even the radio and television for Raynaud's Awareness Month in February. Email tracey@raynauds.org.uk for more information
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Cambridge On a beautiful sunny Saturday the RSA and Scleroderma Society were invited to hold a joint conference on the back of an international congregation made up of the world’s scleroderma experts. We were delighted to host some of these internationally renowned experts at The Fisher Building, St John’s College, in the beautiful setting of Cambridge, and through the course of the day there were a series of engaging presentations on topics such as; stem cell transplants, the challenge of clinical trials and advances in international research. Over 100 delegates attended. The packed morning session included Professor Thomas Krieg, Director and Chairman in the Department of Dermatology at the University of Cologne, who talked about skin manifestations in systemic sclerosis, the importance of Raynaud's, which can be the first symptom, as well as various treatment options for skin manifestations such as UV therapy, different cream applications and immunosupressive drugs. He also presented a section on digital ulcers and calcinosis and how often an interdisciplinary approach to treatment is critical to quality of life. Professor Luc Mouthon, MD, is the coordinator of the National Referral Center for vasculitis and systemic sclerosis, at the Internal Medicine Department, Hospital Cochin in Paris. Professor Mouthon’s talk focused on current and emerging targets and therapies in pulmonary arterial hypertension (PAH) and some general measures that can be taken to help. He also looked at supportive therapy and some new treatments since 2009. With 8-12% of scleroderma patients developing PAH, early detection and management towards prevention is vital for a better, long-term outcome. Professor Alan Tyndall, head of the Dept of Rheumatology in the University of Basel, secretary and founding member of the World Scleroderma Foundation, gave a very interesting session on stem cell therapy of systemic sclerosis. He used a case study to
give an example of how re-setting the aggressive autoimmune system can abate symptoms for at least 15 years in some patients. He shared the results of some worldwide studies into stem cell treatments in autoimmune disease and its success rates. He also talked about mesenchymal stromal cells and its varying success as both an antiinflammatory and having the ability to repair damaged tissue in severe autoimmune diseases. Lastly, he spoke with experience about the clinics that offer stem cell treatments and the challenges individuals face when deciding where to research and potentially undergo treatments. Edward Stern is a Clinical Research Fellow in the Centre for Rheumatology and Connective Tissue Diseases at UCL. He is a renal specialist doctor and talked about his research in kidney disease associated with scleroderma. He is conducting a clinical trial at the Royal Free, assessing the benefits of an endothelin antagonist for patients with scleroderma kidney disease. He also shared the findings to date and explained the challenges of finding the right candidate and finding new suitable recruits. Dr. Robert Lafyatis began his research career studying fibroblast biology and the molecular biology of TGF-Beta at the National Institutes of Health. His talk about advances in understanding scleroderma cross-referenced a research program he has developed, examining the pathogenesis and treatment of systemic sclerosis. This program places a strong emphasis on identifying biomarkers in patients with systemic sclerosis. This research is designed to better understand fibrotic, immunologic and vascular abnormalities that lead to systemic sclerosis and its complications, such as pulmonary arterial hypertension and interstitial lung disease. These biomarker studies have shed important light on pathogenesis, but also have been applied successfully to early phase clinical trials, allowing more complete and informative assessments of therapeutic effects and responses. During lunch, delegates could visit the supplier stands where they could sample some of the latest innovative products for Raynaud's and scleroderma and pick up further information by chatting with the experts. After lunch we had two further speakers, Dr. Richard Silver who has led the Division of Rheumatology & Immunology at the Medical University of South Carolina (MUSC) in Charleston, South Carolina, USA,
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for the past 20 years and is currently Professor of Medicine and Pediatrics. Dr. Silver’s research interests include the pathogenesis and treatment of scleroderma lung disease, as well as environmental exposures and the risk of systemic sclerosis. He talked about how your physician may identify shortness of breath, assess background and history and that this (combined with a range of function tests such as chest x-ray, echo cardiogram and walk test etc) will determine the scale of PAH. He then talked about treatments ranging from medication for pulmonary fibrosis right through to lung transplantation. To round off the day, Dr. James Seibold, M.D, who is the Principal of Scleroderma Research Consultants, spoke. His presentation was obviously research focused and unfortunately will not be shared with the wider public due to confidentiality reasons. However, one noteworthy comment was about funding for research. James explained that, as fibrosis is the biggest cause of death in the world, clinical companies are focussing on the conditions that are affected most by fibrosis, believing if they can crack those they can crack one of the biggest symptoms. As scleroderma falls into that category it has been receiving an increasing amount of funding toward research, which can only be fantastic news. Really great news to round off the day! One patient who attended commented "I would like to say how warm and welcoming everyone was I enjoyed the conference immensely, and how wonderful it was to meet others with the same illness - thank you so much for the invite.” Presentations and videos will be available for you to view online and via our websites, so please continue to check our Facebook page for the latest update. Should you need a hard copy please contact the office.
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Doc Spot
Professor Chris Denton FRCP Consultant Rheumatologist, Royal Free, NHS Foundation Trust, London
If you have a question you would like Professor Chris Denton to answer, send it to the RSA’s Head Office or email info@raynauds.org.uk with Doc Spot in the subject heading. Thanks!
Q: I have a small ulcer on my toe. What can I do to help it heal quickly? A: Small ulcers on the hands and feet can be extremely painful. It is important to treat infection and your doctor may advise antibiotics tablets. In general, local forms of antibiotic or antiseptic are not very helpful. Treating Raynaud’s is important so that blood supply to the toes is optimal to allow healing. Covering the ulcer to protect it is generally useful and your GP practice or specialist in the hospital will hopefully be able to advise further if necessary. Unfortunately, foot ulcers are very challenging on scleroderma. Careful attention to footwear to avoid pressure is essential and it is important to make sure any other factors, such as larger blood vessel problems or diabetes, are excluded. Sometimes treatments such as iloprost infusion in hospital may be used but this is usually for more severe or persistent cases.
Q: We have been told that our teenager has a rheumatic disease but the doctors suggest it might be more than one? The paediatrician has talked about monitoring our daughter. A: Autoimmune rheumatic diseases such as SLE (lupus) or scleroderma often occur in combination, this is termed “overlap” connective tissue disease. At least 20% of cases of scleroderma in adults are associated with overlap – most often with muscle inflammation or arthritis. The same situation is seen in these conditions when they occur in younger people and so this may be the situation that your paediatrician is describing. www.raynauds.org.uk
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Q: I have great difficulty and pain when walking. I know there has been some research done in Italy with fat transfer to hands with a lot of success in people with Raynaud’s, and in the USA it is used in feet. I haven’t been able to find much information on procedures in the UK. As I understand it, the fat transfer encouraged the growth of new blood vessels so I am wondering if it could help my feet as I am sure it is the damaged blood vessels causing the pain? A: This question highlights quite an exciting field of very practical research in scleroderma. It is now appreciated from recent laboratory studies that scleroderma patients have difficulty in regenerating fat tissue under the skin. This gives new insight into a condition that previously was seen as one in which excess scar tissue and collagen formation was a key process. This has led to the use of a well-established plastic surgical treatment called “fat transfer” in several situations in scleroderma. This has been tried in several units and is something we have been working on at the Royal Free Hospital for several years in collaboration with Professor Peter Butler, an expert plastic surgeon. There is clear benefit in fat transfer into and around the face and mouth and some patients have reported some benefit in the hands and limbs. Our experience of fat transfer in the feet is limited – but my concern is that the mechanical aspects of pressure on the connective tissue may be more challenging. It is certainly an area for careful future study. In parallel there have been some exciting scientific studies, including those from Italy that suggest this treatment may partly work by replacing fat derived “connective tissue stem cells” and
this will also be an area for future research. One possibility is that these fat cells might stimulate other cell types such as blood vessel growth but this remains to be proven. In summary, the place for fat transfer as a more general treatment in scleroderma still needs to be determined, including in the feet, but it may have potential in the future.
Q: I have been prescribed a HRT cream to use as a lubricant for sex but I haven’t used it because I am concerned about the side effects. Should this be a concern to me as a scleroderma sufferer and if so, is there anything else you’d recommend I use instead? A: One of the very difficult “non-lifethreatening” complications of scleroderma is the effect on sexual function. It affects both men, mainly through erectile dysfunction (ED) and women. As it is a female predominant disease this is a frequent issue. Problems include vaginal dryness, thickening of the tissues and associated complications affecting bladder and bowel control. Some aspects can be helped by local hormone containing creams and gels and there is certainly no contraindication to this. In some cases additional benefit is obtained using approaches to soften the affected tissues, such as vaginal dilators, but this does need more specialist advice. We refer our patients to gynecology specialists where they can be advised by a multi-disciplinary specialist team. These aspects of scleroderma are sometimes difficult or embarrassing to talk about (for doctors as well as patients) and I encourage you to raise them with your clinical team so that they are not ignored.
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Medical Equipment Appeal
The first item of equipment has been donated to the Royal Free Hospital, London! The Scleroderma Society would like to say a big thank you to everyone who donated to the Scleroderma Society’s Medical Equipment Appeal. Your donations have secured a new ultrasound machine for the Royal Free Hospital NHS Foundation Trust, London. The Vascular Access Service on the PITU ward will use the ultrasound machine to insert midlines for scleroderma patients during Iloprost infusions. The Vascular Access Service has been operating since 2013 and is now at full capacity, this new ultra-sound machine will mean that more patients can choose how to receive their treatment. Agnus receives an Iloprost infusion every 3 months and told the
charity, “I opt for a midline every time now, although the procedure takes longer at the start to insert the line, it means that the line can stay in for the full five days and I don’t have to dread cannulation every morning… It is wonderful, because the line sits higher up on my arm it means that I can sleep better at night and can actually wash properly, I can even go shopping if I want without tubes and bits hanging out.”
Above: Visual representation of ultra-sound machine donated to the Royal Free Hospital NHS Foundation Trust.
Our aim is to provide medical equipment to each of the six specialist scleroderma centres across the UK: London, Bath, Liverpool, Leeds, Salford and Newcastle. Due to the success of the Royal Free service, the Chapel Allerton in Leeds is now wishing to offer the same service to their patients. Therefore our next appeal is for the Chapel Allerton Hospital, Leeds. Our target is £16,000.00 to provide a second ultra-sound machine. You can help us reach this target by donating today.
Call 020 7000 1925 to donate to the Scleroderma Society: Medical Equipment Appeal. When you have finished reading this newsletter, why not drop it into your doctor’s surgery in order to help create awareness for Raynaud’s and scleroderma?
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Predicting Raynaud’s attacks
Patient ability to predict attacks of Raynaud’s phenomenon How well can people predict the occurrence and the severity of Raynaud’s attacks? What are the triggers for Raynaud’s? And how does living with Raynaud’s affect people’s quality of life? To answer these questions, we undertook a study in which people with Raynaud’s phenomenon were invited to take part in an online survey asking questions about their experiences of living with the condition. Many members of the Raynaud’s and Scleroderma Association kindly took part in the study and we really are most grateful to all those who took the time to participate. Members of the Federation of European Scleroderma Associations and the American Raynaud’s Association also participated.
The impact of Raynaud’s on an individual’s quality of life was similar between primary and secondary Raynaud’s, reflecting that primary Raynaud’s can have a major impact on people’s quality of life. Most individuals (78%) reported making at least one adjustment to their life due to Raynaud’s. Individuals were asked to grade their quality of life with Raynaud’s on a 0 (worst imaginable) to 10 (best imaginable) scale. Average quality of life was reduced in both primary Raynaud’s (6.5) and secondary Raynaud’s (5.2).
We had results from well over 400 individuals with Raynaud’s, originating from 15 different countries! The majority of individuals - as might be expected - were female. This is because primary Raynaud’s phenomenon and many rheumatic conditions associated with Raynaud’s (e.g. scleroderma) are more common in women than in men.
In conclusion, our study found that patients with both primary and secondary Raynaud’s phenomenon have a limited ability to predict both the occurrence and severity of attacks. This is an important finding, which should be taken into consideration when designing new drug therapies and clinical trials. For example, if some individuals with Raynaud’s can’t reliably anticipate future attacks (or severity) then this would limit (for them) the usefulness of drug therapies designed to be taken on an intermittent basis to prevent attacks. In addition, although primary Raynaud’s is sometimes considered to be ‘benign’, our study confirms that primary Raynaud’s has a significant impact on quality of life, similar to secondary Raynaud’s. Finally, once again, I would like to thank the Raynaud’s and Scleroderma Association for supporting this study and the members who participated, without whom this study would not of been possible.
Fifty-eight percent of individuals reported that they could predict at least 51% of Raynaud’s attacks. Similarly, 57% percent of individuals reported that they could predict the severity of attacks ‘fairly well’ or better. Forty-three per cent reported that their ability to predict was ‘poor’ (30%) or ‘very poor’ (13%). The study confirmed the need for more research into the treatment of Raynaud’s. Sixty-four percent of individuals reported either a ‘poor’ or ‘very poor’ ability to prevent/control attacks of Raynaud’s. In addition, only 16% of individuals reported that one or more of their medications were effective. The majority of individuals (91%) reported that cold sensitivity was a trigger for Raynaud’s, with approximately one-third (30%) highlighted emotional stress as a trigger.
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Michael Hughes Arthritis Research UK Clinical Research Fellow The University of Manchester
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Scleroderma story
Living With A Long Term Condition Hannah Harris I have always been a positive person, strong willed and have a zest for life. I was brought up in Wales and come from a large family. My father always taught me to embrace the outdoor life, whatever the weather, and that way you will always be fit and healthy, have a very strong will, never give up and always be able to laugh at yourself. I studied hard at school and University, and enjoyed outdoor sports that most children would never have the experience of trying: abseiling, canoeing, camping, rock climbing, riding, athletics, triathlon etc. I even ran in the cross country for the Wales under 15s team, swam competitively, competed in triathlons and steeplechases. I adopted my son in 1993 from overseas, a new mum after trying for 7 years, he was a beautiful baby aged 9 months with huge eyes like saucers. Whilst overseas I contracted Hepatitis C from the water supply, and this seemed to start a chain reaction of events that sent my body into shutdown. It hit me like an express train, without stopping. I was diagnosed after two years with Diffuse Systemic Sclerosis, with an overlap of liver problems and Lupus. As far as I was concerned my life was over, I was only 32 years old. I lost all my mobility, and was totally reliant on others for everything, I was unable to eat and was peg fed for nearly three years. I had vasculitis, my body was covered in sores, Lupus, lichen planus in my mouth, and liver failure, and was weighing just 38 kilos. How do you come back from that?
determination beyond belief. It was a very hard road, but I had an army of soldiers fighting behind me. I am not saying life is easy now, I had to give up my blossoming career in the NHS to endless hospital appointments, but I still get to do the things I love to do most. I can watch my lovely son develop into a fine young man, I get to do sports with many adaptations, I get to go out in the fresh air, watch the seasons come and go, and watch the nature - the new chicks, birds nesting, everything is a wonder and I get to see it all. I have my ups and downs, good and bad health, but my coping skills are: let’s see what’s in store tomorrow, next week and next month, and I focus on the positives not the negatives. Playing sport in the cold can be a challenge, but you get around that one too. As I had to give up athletics, I had to find a sport that I could do, not easy, but my husband is a very keen golfer. He’s really good too! He suggested that I give golf a try. Well nothing is impossible. First challenge holding the club, second challenge swinging it, and turning your body, and walking around the course. As I said nothing is impossible. I don’t have a conventional swing, I can’t turn the left side of my body so my left foot comes up, and I use a golf buggy to get around. I love every minute of it. I discovered a fantastic golf club, in Barnet, North London, who are disabled friendly, nothing is too much trouble to accommodate me. The course is owned by
a lovely family, who also host the Disabled Golf Open. I also belong to the Disabled Golf Association, who are a Charity made up of disabled golfers, run by Graeme and Sue Robertson. We all have varying degrees of disabilities, and play various levels of golf. We get together on a regular basis, up and down the country, and play golf together. We have such a good laugh, it’s really sociable, we eat together after, and it’s better than being at home being lonely. It’s helped me so much, I no longer feel like a person with a disability with no confidence, I feel alive and bursting with excitement and anticipation. If you would like further details, please get in touch with me via the Scleroderma Society as the more the merrier, and we are always asking for new players to join us. I also belong to a book club, knitting and sewing club, a women’s only club, I swim, play bridge, go to yoga for the disabled, travel as much as I can, which can prove a real challenge. I have just returned from my niece’s wedding in Israel. So my motto in life is work with what you have, always be positive, continue to do the things you love to do, even if you have to do it with major adaptations, don’t let the disease get to you, however hard things get. Just think of all the things you love to do and who the important people are in your life. And, you know what, you’ll get through it!
Well I spent 6 months in hospital, I couldn’t even hold my new baby, I had waited so long for, and told I would never be able to walk again, or be independent again. I spent 3 years so determined to get better and prove everyone wrong. I was even more determined to be a good mother, and do the things I loved to do most of all, but I have always believed as my father had taught me, anything is possible if you try hard enough. Thankfully, I have a very supportive family who helped me through the rough times, and friends who would walk through fire for me, and I love them all very much, but that little being, who is now a 23 year old strapping young man, drove me to
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Living with fatigue You have told us that one of the most debilitating aspects of living with scleroderma is fatigue. Fatigue is unfortunately a part of many long-term medical conditions and can become worse if the condition is causing you to feel pain. The NHS has compiled a list of self-help tips, things you can change and try at home to make living with a long-term condition and fatigue easier. Eat often to beat tiredness A good way to keep up your energy through the day is to eat regular meals and healthy snacks every three to four hours, rather than a large meal less often.
Perk up with exercise You might feel too tired to exercise, but regular exercise will make you feel less tired in the long run, and you’ll have more energy. Even a single 15-minute walk can give you an energy boost, and the benefits increase with more frequent physical activity. Start with a small amount of exercise. Build up your physical activity gradually over weeks and months until you reach the recommended goal of two-and-a-half hours of moderateintensity aerobic exercise, such as cycling or fast walking, every week.
Lose weight to gain energy If your body is carrying excess weight, it can be exhausting. It also puts extra strain on your heart, which can make you tired. Lose weight and you’ll feel much more energetic. Apart from eating healthily, the best way to lose weight is to be more active and do more exercise.
College of Psychiatrists advises going to bed and getting up in the morning at the same time every day; avoid naps through the day, and have a hot bath before bed (as hot as you can bear without scalding yourself) for at least 20 minutes.
Reduce stress to boost energy Stress uses up a lot of energy. Try to introduce relaxing activities into your day. This could be working out at the gym, or a gentler option, such as listening to music, reading or spending time with friends. Whatever relaxes you will improve your energy.
Talking therapy beats fatigue There’s some evidence that talking therapies such as counselling or cognitive behavioural therapy (CBT) might help to fight fatigue. See your GP for a referral for talking treatment on the NHS or for advice on seeing a private therapist.
Sleep well It sounds obvious, but two-thirds of us suffer from sleep problems, and many people don’t get the sleep they need to stay alert through the day. The Royal
Cut out caffeine The Royal College of Psychiatrists recommends that anyone feeling tired should cut out caffeine. It says the best way to do this is to gradually stop having all caffeine drinks (this includes coffee, tea and cola drinks) over a three-week period. Try to stay off caffeine completely for a month to see if you feel less tired without it. You may find that not consuming caffeine gives you headaches. If this happens, cut down more slowly on the amount of caffeine that you drink.
Drink less alcohol Although a few glasses of wine in the evening can help you fall asleep, you sleep less deeply after drinking alcohol. The next day you’ll be tired, even if you sleep a full eight hours. Cut down on alcohol before bedtime. You’ll get a better night’s rest and have more energy. The NHS recommends that men should not regularly drink more than three to four units a day. Women should not regularly drink more than two to three units a day. "Regularly" means drinking every day or most days of the week.
Drink more water for better energy Sometimes you feel tired simply because you’re mildly dehydrated. A glass of water will do the trick, especially after exercise.
Christmas is a great time to be raising FREE donations for your two favourite charities! Give as you Live is a shopping and price comparison website with a heart. You can shop for products from thousands of leading online retailers and a percentage of every purchase made will be donated to charity. So this Christmas, when buying gifts online, why not sign up to Give as you Live and help either The Scleroderma Society or The Raynaud’s & Scleroderma Association? www.giveasyoulive.com #GivingTuesday, on the 1st December in 2015, is a global day of giving. After the sales of Black Friday and the online shopping boom on Cyber Monday, #GivingTuesday is an opportunity to come together to show the world why it’s good to give. This year we are encouraging members to give a small donation to the RSA and Scleroderma Society. A donation of £5 on #GivingTuesday will help us continue to provide crucial support to people with scleroderma and Raynaud’s. Your donation could help fund our helpline or provide an information pack to a newly diagnosed individual. If you donate £5 on the 1st December, either via text, online or by calling the Scleroderma Society, you will receive a charity pin
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as a token of our appreciation for embracing the spirit of #GivingTuesday. Donate by phone: Call 020 7000 1925 Donate by text: Text TUES12 £5 to 70070 Donate online: www.sclerodermauk.org/donate Proceeds will be split between the Raynaud’s & Scleroderma Association and Scleroderma Society. Keep an eye on our social media pages, as we will be thanking individuals who have given to the charity over the past year from the 1st December for one week.
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Raynaud’s story rheumatologist at the Heath Hospital who put her daughter on Nifedipine 3 times a day and it is helping. The condition has a real impact on daily life and can make everyday activities like eating, bathing, going outside, plus a myriad of other things most of us take for granted, very difficult. “The winter months are awful, the nifedipine is making a difference, but she cannot go outside to play and now she is older, can’t eat ice cream or cold foods because her hands swell when she handles cold things. Gracie does not have typical Raynaud's, as she misses out the white finger stage. It starts in her hands, which turn blotchy blue, then travels up her arms, feet, legs then face. She frequently has an attack when she moves from the outside back inside. I try to keep the house warm but the change in temperature brings an attack on. It’s also very difficult bathing her, she frequently has a Raynaud’s attack when we try and have a bath. Just simple normal tasks are a real challenge.” Laurie has a challenging time herself, not only looking after her daughter’s condition. She has regular sky high fuel bills to cope with and it can be very difficult to watch her daughter struggle and try and explain to her the differences between hot and cold. As she looks normal, Laurie finds it difficult to describe to people the condition and people don’t fully understand.
Laurie was delighted to be a mother to her beautiful baby girl, Gracie, but imagine not being able to perform simple tasks like taking a stroll outdoors in the pram, or to give your baby a bath without the fear of your daughter having a Raynaud’s attack. Laurie wants to share her story in order to raise awareness of this condition that can affect anyone of any age and affects 1 in 6 of us, here in the UK. Laurie explains, “From the age of 3 months my daughter’s hands were turning blue, I had never heard of Raynaud’s so just thought I wasn’t keeping her warm enough and started to wrap her up a bit more. It 12
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continued, despite my efforts to keep her warm. We took many trips to the hospital and no one could give me an answer. One day her face, arms and legs turned blue/black, so I rang my Health Visitor who came straight away as she was very worried.” Laurie went to hospital again and eventually at 14 months old, Gracie was diagnosed with Raynaud’s. She is seen by a consultant
“It’s scary” says Laurie. “I have had people stop me in the streets to tell me that my baby is wrapped up too much and that she would overheat. Whilst I want her to be a ‘normal’ child there are normal things that she just can’t do, so it’s a balance between letting her do all the other things little girls do and managing her Raynaud’s. I’m permanently worried about her having an attack”. Gracie, now aged 2 ½, also suffers from regular high temperatures. She is currently on colchicine and prednisolone and will see her immunologist again in 3 months time for further testing and to discuss what to do next. Laurie says “My little girl has a very bright enthusiastic view on things, she does so well coping with her condition and the Doctors and nurses can’t believe she has a temperature of 41 degrees when she is still smiling away and just getting on with it.” What a brave little girl! Photo credit rossparry.co.uk
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Raynaud’s tips We have compiled a list of tips for how to cope with Raynaud’s, especially in winter. These have come from Raynaud’s patients on Facebook, so hopefully you will find them useful... 1.
Avoid having ice in your drinks as this chills the glass and can trigger Raynaud’s in your hands. It will also lower your core body temperature.
2. Wear lots of thin layers, rather than one big layer, to help you to stay warm. If you like to keep your neck warm, try wearing two scarves rather than one for more layers and to reduce the amount of gaps where cold air might get in. 3.
If you enjoy swimming, but find the water isn’t warm enough, jog on the spot before you start to help warm you up.
4. Turn your socks and tights inside out, so the seam is on the outside. On the inside, the seam might rub on your toes and this aggravation can trigger Raynaud’s. 5. Avoid Raynaud’s triggers such as caffeine and nicotine. 6. Warm your gloves on a radiator or in an airing cupboard before you go out. 7.
If you are heading out in your car on a chilly morning, start your engine with the heating on five minutes before you leave to make sure the car is toasty before you set off. Just make sure you don’t leave your car unattended.
8. An effective way to keep warm is to wear tights under your trousers and socks. You can get pairs that go high up the body that will also help to keep your torso warmer. 9. Be prepared when you go out - always take out extra gloves and hand warmers in your bag. Also plan ahead, make sure you know where the nearest toilet is so that if you are feeling cold, you can use the hand dryer to warm yourself up. But remember, really warm heat on really cold hands can produce chilblains, always try to increase the exposure to heat gradually. 10. If you suffer with dry or cracked lips, don’t use an oil based product, such as vaseline, as this will act as a barrier but won’t be absorbed into the lips to help re-moisturise them.
Edgar Stene Prize 2016 The competition for the Edgar Stene Prize 2016 is currently open for entries on the topic of: “Living with a rheumatic or musculoskeletal disease (RMD): How I take action to enjoy life to the full” The competition invites people to share their personal experiences and their individual coping strategies to ‘live life to the full’ despite being affected by a rheumatic or musculoskeletal disease. What are your top tips on how to live as independently as possible? How can you actively take control of your life and achieve your goals? The competition is open to everyone living with an RMD (minimum 16 years of age). www.raynauds.org.uk
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Each essay should not exceed 2 pages (A4) and be typewritten in Arial 12 point with single line spacing in Microsoft Word (PDFs will not be accepted). The deadline for submitting essays to the Scleroderma Society is 20th December 2015. Please submit the essays to info@sclerodermasociety.co.uk. For the detailed prize rules, and to read the entries from the 2015 competition, please visit: www.eular.org/pare_stene_prize.cfm. All entries will be reviewed by the RSA and Scleroderma Society and one will be
submitted on the 31st December 2015 to ARMA, who have put together a UK judging panel. All entries will be reviewed and one will be selected to represent the UK. The overall Stene Prize winner will be announced by 15th March 2016. The Stene Prize winner will be awarded a prize of €1,000 and will be invited to attend the Opening Plenary Session of the EULAR Congress in London (June 2016). All travel and accommodation will be provided. The runner up will be awarded €700 and the essay in third place will win €300. SCLERODERMA AND RAYNAUD’S NEWS
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Shop The weather is getting chilly and our thoughts turn to snuggling up by the fire in the dark evenings as well as making sure that our gloves are warming in the airing cupboard or on a radiator, ready for winter action. We have some fantastic new products for you to treat yourself to, or buy as stocking fillers, just in time for Christmas. You can view all our size and colour range online at rsa-shop.co.uk and purchase via credit card or Paypal or, if you don’t have access to the internet, call the office and we will be able to assist you in your purchases. We really appreciate your orders, every penny of profit goes back into the charity to help fund research, continue support and provide guidance. Happy Shopping! £18.00 Duo Pack of 8% Silver Gloves
This pack contains one pair each of our famous stretch to fit seamless gloves. They keep hands warmer and help ward off a Raynaud’s attack. These can be worn on their own or as liners with outdoor gloves. See online for other health and practical benefits of our best selling product.
NEW
12% Silver Fibre Gloves
£19.50
These 12% Silver fibre gloves are seam free, flexible and will allow you to operate your mobile device, visit the cashpoint and handle small change, without having to remove them. Made using 12% pure silver thread woven on the inside of the glove, they have light stretch for improved fit and comfort and have been designed to accommodate swollen fingers specifically for those who have Raynaud's or scleroderma.
NEW Heat Holders Hat
£19.99
£7.99
& Glove Set
Heat Holders Slipper Socks
Available in men’s and ladies, boxed together in a perfect gift set for Christmas. They have a lovely fleece lining and use Heat Holders specially patented yarn to keep you really toasty and warm this winter.
These slipper socks have suckers on their soles, perfect for around the house instead of slippers as they grip tiles and flooring safely. The socks have a 2.3 tog count and use advanced insulating yarn and have a super soft brushed lining to keep your feet really toasty.
NEW
Heat Holders Neck Warmers
NEW
£9.99
From your head down to your toes, we have new products in to keep you warm this winter. Our new neck warmer fills the gap between your head and chest and makes a great accessory. The product is loosely shaped, is made from advanced insulating yarn and has a wonderful fleece lining.
Hot Togs Thermal Socks
£12.00
From hiking and biking to cycling and riding, these socks are made from a thermolite yarn. This is a lightweight hollow-core fibre designed to wick moisture away from the foot and promote breathability for your feet. They combine warmth with comfort and the loop pile stitching helps protect against rubbing and blisters and are a perfect stocking filler.
VISIT
A huge thanks to Astec
rsa-shop.co.uk
who kindly donated
TO PLACE YOUR ORDER, USE HNOC15 TO RECEIVE 10% DISCOUNT*
£1,000 to the RSA. Thank you so much.
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ALTERNATIVELY YOU CAN CALL THE OFFICE FOR ASSISTANCE IN YOUR PURCHASES. www.sclerodermauk.org
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winter discounts As a special festive treat to all our valued members, you will receive an additional 10% discount on selected RSA products purchased throughout the month of November*. With so many great products to choose from there is a gift for everyone.
Silver Fibre Bundle
£20.50
A pair of 8% gloves and a pair of short socks make a great stocking filler. The gloves are anti-static, so you don’t have to take them off to use your phone. Both will keep you warm and cosy.
Heat Holders £24.99 ‘Snuggle Up’ Blanket
Winter Survival Kit
£45.00
Get yourself winter-ready with our best sellers in one great kit. Save up to £15 on these items when you buy seperately, plus literature and a free gift, it makes a great starter kit for anyone with Raynaud’s or who needs to keep warm as the cold sets in. Upgrade to 12% silver fibre gloves for just £10 more, see online for more details.
Fuel Grip
£2.46
This handy little gadget is a great stocking filler and is ideal for all vehicle owners who have difficulty holding the trigger on a fuel pump! Easy to use and sits neatly on top of the petrol cap for clever storage.
Scleroderma Society Christmas Cards
£4.99 for 10 with FREE P&P
To purchase the Scleroderma Society's range of Christmas Cards please visit: www.sclerodermauk.org and click on Order Products. Alternatively, call the Scleroderma Society team on 020 7000 1925 who will process your order over the phone.
RSA Christmas Cards
£4.99 for 10 with FREE P&P
The RSA’s Skating Around the Tree 16cm x 16cm
REMEMBER TO USE CODE HNOC15 AT CHECKOUT TO RECEIVE YOUR
10% DISCOUNT*
*Offer ends 30th November 2015
Relax with a Heat Holders premium fleece blanket- perfect for wrapping up warm on those cold Winter nights. With a 1.4 tog rating, its generous size and incredible softness make it a perfect gift for yourself and a beautiful home accessory. Size: 180cm x 200cm Colours available: Antique Silver, Moon Rock, Hot Chocolate and Mulled Wine
NEW
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SCLERODERMA AND RAYNAUD’S NEWS
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Eating to lower your inflammation Gemma Crutchfield, a Nutritional Adviser, is currently looking for people who are suffering from autoimmune conditions to try out her nutritional approach to restoring health. She is compiling a cookbook and has put together a 6-week elimination diet that she believes will reduce symptoms, by lowering inflammation and removing food triggers. One example recipe is printed below. Gemma has brought to our attention a really interesting study (note 1 below) that compared four diets and their effect on inflammation in the body: 1. 2. 3. 4.
A fats and processed meats diet (fats, oils, processed meats, fried potatoes, salty snacks, and desserts). A bean, dairy, and refined grains diet (beans, tomatoes, refined grains, and high-fat dairy products). A vegetables and fish diet (fish and dark-yellow, cruciferous, and other vegetables). A whole grain vegan diet (whole grains, fruit, nuts, and green leafy vegetables).
Diet number 1 (which included meat), raised three markers of inflammation. Diet number 2 (which included dairy), raised one marker of inflammation. The 3rd diet (which included fish), lowered one marker of inflammation. However the vegan diet, number 4, lowered four markers of inflammation. This would indicate that if one wishes to lower inflammation from an autoimmune disease through diet, a vegan approach would be the most likely to succeed. If you are interested in participating in this trial, please email lucy@raynauds.org.uk 1 Nettleton JA, Steffen LM, Mayer-Davis EJ, Jenny NS, Jiang R, Herrington DM, Jacobs DR Jr. Dietary patterns are associated with biochemical markers of inflammation and endothelial activation in the Multi-Ethnic Study of Atherosclerosis (MESA). Am J Clin Nutr. 2006 Jun;83(6):1369-79.
Roasted root veg with avocado sauce and quinoa Ingredients 150g squash (chopped quite small; you can leave the skin on, but take off the top and bottom) 4 small whole carrots (diced) 4 small/2 large parsnips (diced) 1 sweet potato (diced) 2 medium red onion (diced) 2 cloves garlic (chopped finely) Thyme, rosemary, sage and black pepper to taste 160g quinoa (optional) Avocado sauce 1 ripe avocado peeled, stoned, diced 1 apple (I like the tartness of a cooking apple such as a Bramley, but use what you can find) 1 inch fresh ginger 125ml water 80ml olive oil Method 1. Wash the root vegetables, dry them and place in a bowl.
5. Once cooked drain through a sieve, then put some quinoa
2. Add garlic, herbs, and pepper then mix well with your hands
in a teacup and turn out inverted for 1 portion, serve
3. Place this mixture in a medium ovenproof dish with the water
with its veg and sauce.
and cook on a high shelf at 220 °C for 40 mins or until they
6. To make sauce blend sauce ingredients above.
are cooked through.
7. Put the vegetables on a plate next to the quinoa and
4. While the vegetables are in the oven place the quinoa in a
dollop on the sauce.
saucepan with plenty of water and boil for around 20 minutes.
Please remember, everybody is different and what is right for one person is not necessarily right for another. It is best to speak to your GP before beginning any major lifestyle changes. 16
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Fundraisers
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SCLERODERMA AND RAYNAUD’S NEWS
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Fundraisers Sandra has Limited Systemic Scleroderma and walked 28km to show scleroderma that she can. Sandra said, “On Friday 11th September, I travelled down to London in readiness to walk 28km along the River Thames...my Thames Path Challenge. Having never been to London before, my first challenge was the Tube! Well I needn't have worried. Euston, 3 Tube journeys, a short walk I was at my Hotel. Very pleased with myself! I decided to do this walk for the Scleroderma Society. I have Limited Systemic Scleroderma and Raynaud’s and as most people do, I have researched it endlessly and, touch wood, it isn't affecting me too much yet. So I decided to take on this walk while I am able. I really enjoyed it! It was a sunny day. It wasn’t hot or cold. The Thames was busy all the way! Something was happening all along the route: rowers, anglers, leisure cruisers, speed boats. The River Boat race at Richmond. Fancy barges, gorgeous houses I loved it! It certainly didn’t seem like 28km! Except my middle toes wouldn’t agree...thickened nails and skin made those poor things really sore! They recovered. So did I. A long soak in the bath later, I was so proud. I had raised money to help research into this naughty condition. Roll on next year.”
Organiser Mandy dedicated this years Billingborough Charity Run to her close friend, raising £1,108.00 to support others with scleroderma. On a very wet, miserable, typical August bank holiday Monday, over 40 amazing volunteers gave up their time to marshal the Billingborough 5km and 10km running events. All marshals were in their places, cakes were baked, kettles were boiling, timers prepared, registration desks manned, first aiders in place, sweepers at the ready, safety officer ready. The big question was, would anyone turn up to support us in this awful weather? Well the answer was outstanding, 90 people turned up to run or walk and raise money for the Scleroderma Society and help raise an amazing £1,108.00. There were walkers (one of which herself has scleroderma), there were fun runners and there were club runners. The reason we picked to fundraise for the Scleroderma Society was because Mandy Towers, one of the organisers, this year lost a good friend to the disease. After advertising the event a further 2 people with the condition came forward to support us. The feedback from the event was very positive, we received emails from many people saying despite the weather they had a great day. The only complaint we received was "this is Lincolnshire, where did you find those hills!" Both Mandy and I want to thank all the volunteers for helping to make the event a safe and enjoyable one for all participants and "next year please can we not have rain!" - Debbie Chessum
Lorna ran the Robin Hood Half Marathon for her little boy Theo. Take a look at her story… My son Theo was diagnosed with localised scleroderma on his forehead and chin 2 and a half years ago. Since then we've heard so many inspiring, courageous and heartbreaking stories of others who have been affected by this rare and little-known condition. I felt like I wanted to do something to try and raise awareness of scleroderma (it took us a long time to get a diagnosis for Theo), and also fundraise for The Scleroderma Society, knowing the money would go directly towards supporting those with the condition and help fund research that hopefully one day means we can find a cure. It was big challenge for me to run the Robin Hood half marathon as I'm not a natural runner, and before I started could barely manage 5K; but I trained hard and the atmosphere on the day was amazing. Thinking about why I was running kept me going for the last few miles when my legs were a bit like jelly and I was really proud to finish in 2.25 hours – I would definitely do it again.
Have you been inspired to take on a challenge to raise awareness and vital funds? Find out about how you can fundraise for the Scleroderma Society by visiting our website www.sclerodermasociety.co.uk, emailing our team fundraising@sclerodermasociety.co.uk or calling our team on 020 7000 1925. The Scleroderma Society does not receive any government funding and so relies on the generosity of our fundraisers to help us continue our vital work.
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London to Paris
London to Paris 2015 It all started with an email from Amy offering up spaces on the London Paris Ride in September 2015… “Interesting” but not sure about the timing in September due to lots of commitments but none of them would raise any money for a great cause. As the weeks went past I requested more information and then took the plunge – enough prevarication… just go for it… Uncertain as to how it would go I came up with a training plan that I thought would work for me. Very soon September burst through the door along with assisting in decorating our daughters house… this was finished the night before I was travelling down to London... Easy way to pack – cram as much stuff into my largest bag and be selective when I get to our daughters in London… luckily they had taken my bike down the week before so no taking the bike on the train and tube plus luggage.
Of course when we landed in Calais it was dark – so all riders in convoy to various hotels…
Day 1 Early start this one… taxi booked for 5.15am to ensure I got to Crystal Palace for around 6.00 to register and drop off my bag. Always knew this was going to be a long day… the atmosphere was already starting to build with 130 riders representing 44 charities – lots of groups of riders with a smattering of individuals such as myself. Riders briefed and off we go at 7.00am – no issues with route out of London – clearly marked and service intervals for drinks and lunch all on the pocket map plus emergency phone numbers in case of problems. As the morning progressed the weather came out to blue sky and sunshine – great weather for riding… target was to get to the rendezvous point just outside Dover for late afternoon… after a few miles I met up with two riders also riding as individuals – lots of talking and absorbing the beautiful Kent scenery… game on to spot the first orchard and hop fields. Late afternoon we all met outside Dover and rode in convoy to the ferry for our crossing to Calais. The crossing offered the opportunity to have some proper food “you do get numb to the endless energy bars etc” – but I shouldn’t forget to say how great the service stops are and amazing lunch stop was.
Day 3 Again simply stunning scenery from leaving Abbeville – it just got better and better as your legs are by now ready for most things… and as expected the countryside is becoming smoother with Paris looming. Would really like to spend more time in this area at a later date – perhaps a few days cycling. Anticipation for everyone is high for Day 4 the ride to Paris… the weather forecast is being sought as we have had 3 amazing days for riding… but alas day 4 promises to be a really wet one.
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Day 2 France – great breakfast and off we go – at your own pace or with your group… amazing scenery with equally stunning place names… Rebertingue, Desveres and on it goes. The lunch stop today was an amazing stop by the River Canache and what the team served up was awesome. Onwards with stunning Chateau and villages and a few hills to build on the challenge of the daily kilometres. Tonight we were in Abbeville – general conversation among the riders that day two was harder than day one… not sure this was the case – more about day one being the longest ride in miles and a very early start. Still nothing food and a good nights sleep wouldn’t fix.
Day 4 Up and about, breakfast, bag, in to van… still dry but my mind is telling me to get off and get a few miles in before the weather breaks. So off I went and after a few miles I was passed by a group of riders from the Royal Bank of Canada “racing greyhounds” also riding to Paris. I asked if I could sit in with them… they clearly had an intention to ride hard to Paris. After a while I decided perhaps they are not riding as fast as I would like – so I rode up to the front of them and injected a bit more pace… it seemed to get faster and faster and in no time we arrived at the first drinks stop. Hey old legs living on memories. At the stop I met up with a couple of riders from our group and we set off for Paris… just
as the rain started – it went from light drizzle to torrential to tropical in about 5 minutes – no matter how good a jacket you had it was going to be wet for the next few hours as we skirted our way into Paris and our rendezvous point. All the direction arrows in place so no worries on getting lost – besides – telephone numbers etc… and just head for the big tower. We got to the rendezvous and decided to head for a café… as we left early – it could be a while before everyone arrives… … coffee and cognac – that got us warmed up… then a food order followed by a beer… it was just simply wet outside and around our table – pools of water. The café owner was happy to have us… … outside was a real picture – a Parisian cyclist riding his bike with his umbrella up – not sure I want to try that. Then back to meet up with the “team” – photo call… then in convoy for a ride to the Arc de Triomphe – quite spectacular 130 riders with cars ensuring we are protected from traffic - of course with the rain it proved to be a real “Puncture Fest” for the bike tyres. Around the Arc then on to the Eiffel Tower – simply amazing… what a way to finish and the sun finally peaked through. An amazing journey for any cyclist regardless of age or ability – for solo or group ride… with fantastic organisation… Thank you to all my sponsors and would recommend that you and your friends give this a go… a great way to raise funds and have a great time… don’t be put off by the miles – they soon go by…
Chris SCLERODERMA AND RAYNAUD’S NEWS
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Fundraisers Connor is 24 and has suffered from linear scleroderma for the last twenty years. Connor's scleroderma has shortened his left leg by an inch-and-a-half and causes him fatigue and near-constant, chronic pain. Despite taking a concoction of medicinal tablets as complex as the condition itself, Connor has found that the most effective form of relief is cycling. "Cycling helps. It allows me to build my strength up because it is constantly being attacked by my condition," he explained. "If I do not cycle and give that muscle strength, there is no fibre in it. Cycling is the thing that helps, that doesn’t cause me pain. If I was not cycling I would in a worse state." He believes the strength he gains from cycling allows him to live a fuller, healthier life, and helps him manage to work as a freelance sound engineer. Connor amazingly cycled 320 miles from London to Paris in July 2015 in order to fundraise over £1,000 for the RSA. He didn’t let his scleroderma, or a lack of training due to having a three month old baby boy, stop him.
Kirsty climbed Mount Kilimanjaro in June as a tribute to her mum, Jennifer Ainsworth, who sadly passed away ten years ago. Kirsty raised a tremendous £3,088. Kirsty said... "My mum suffered from Raynaud’s and scleroderma, so I wanted to raise money for the RSA because, not only would it have meant a lot to my mum, but also I wanted to raise awareness of the conditions and vital research funds. The climb itself took six days, starting at Machame Gate and ending at Uhuru Peak, 19,341ft up. Each day presented a new terrain beginning with the sticky, damp rainforest, through barren moorland and rocky mist-covered boulders to the ashy almostvertical summit route. One of the trickiest sections was on day four at the ’kissing rock’, named so because the 50ft drop below can only be avoided by shuffling sideways across a ledge whilst giving the boulder in front the tightest hug of your life. “Kiss the rock for good luck” they say! Nonetheless, the most difficult part was, by far, the climb to the summit, Uhuru Peak. With only a few hours sleep the summit climb began at 12am where I dragged myself up the remaining section of the mountain wearing every piece of clothing I brought with me in the -16 celsius temperatures. I made it to Uhuru Peak at 7am just as the sun was rising and it was the best feeling in the world! I managed to snap my hand out of my glove for a few seconds to take some pictures before I began my descent. Eight hours later, once I reached the resting point for the day, I was able to reflect on the experience. The feeling was second to none and I was just so pleased to have kept my promise of making it to the summit for everyone who had sponsored me. I can’t thank my friends and family enough for their generous donations. I hope the funds raised will be helpful to The RSA."
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SCLERODERMA AND RAYNAUD’S NEWS
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Fundraisers Thanks also to the following: Rhiannon and Codie who raised £246 with a walk Mr W Gardner who collected £510 for us at his 80th Birthday party Sharon Rai who took part in the Richmond Running Festival and raised £632.50 Amanda Layen and her mum Shirley Layen who took part in The Colourthon, a 13.1 mile walk, and raised £350
Anne Nequest’s sewing group who raised £369 Charles Hill and everyone at the Luncheon club who raised £120 Laura Fraser who did a skydive and raised £448 Debbie Riley ran the 5k Derby Fun Run and raised £376.50 Mr & Mrs Hunt who celebrated their Golden Wedding Anniversary and raised £100 for us in lieu of presents Everyone at the Hollicars Petanque club who raised £30 Brenda Holden and friends who completed the Wirral Coastal Walk and raised £340 Laura Chapman ran the Manchester 10k and raised £95
Kathleen Smith swam a mile and raised £40 Colin Byers is supporting the RSA by walking between Glan Clwyd Hospital and Royal Salford Hospital, in memory of his wife, between the 22nd and 26th February, 2016. If you would like to show your support in any way, or join all or part of the walk, please email lucy@raynauds.org.uk.
If you feel inspired by these wonderful fundraisers, and would like to fundraise on our behalf, please get in touch! We can support you throughout your fundraising endeavour and every penny raised truly counts to us.
How would you like to have some festive fun whilst raising money for the RSA? We have spaces available in the Santa Dash, a family friendly run in London on Sunday 6th December. You get a free santa suit so everyone is wearing one, which makes for an amusing sight and also adds to the festive atmosphere! For those aged 8 and over, there is a 5k or 10k option, and for the children under 8, there is a free mini Santa run of 100 or 200m! Participants can also enter pushing a buggy so even babies can enter! Children entering the 5k or 10k must be accompanied by an adult. We had great responses from the runners last year who said they had a brilliant day, so why not try it? Email lucy@raynauds.org.uk for more information.
We are delighted to have a place in the 2016 Virgin London Marathon. If you, or someone you know, would like to run on our behalf, please tell us, in no more than 200 words, why you would like to run it for the RSA. Entrants must be over 18. Thank you! www.raynauds.org.uk
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SCLERODERMA AND RAYNAUD’S NEWS
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Hand exercises The use of heated wax bath treatments for the hands in people with scleroderma: do they make hand exercises more effective? By Will Gregory The study has now been complete and results being analysed. We will soon be at the point to share our results on whether heated wax bath treatments are more effective than hand exercises. The aim of the study was to see if daily wax bath use, enhanced the effect of regular hand exercises for those with hand-effected Scleroderma. The 36 study participants managed to do the hand exercises most days and those using the wax bath were able to use it successfully and regularly at home. There was a good mix of those with diffuse versus limited disease and also a fair representation of those early in their scleroderma treatment (diagnosed less than 3 years). The initial wax baths had a few glitches, so we upgraded to a more reliable model soon into the study.
One or two people found the home exercises a bit sore to do, but the majority found them comfortable, and easy to incorporate into their daily routine. From feedback at the 3rd visit, participants appear to have shown some good improvements in movements and functional abilities, however until the full analysis is performed we can't predict the outcomes to the study's precise questions. We plan to submit the results and full analysis to the World Scleroderma Congress and of course there will be a full report in the next newsletter as well as sooner information via the Society's social media. Whilst the issue of the amount of benefit achievable by wax bath use is not fully clear yet; in the meantime there is enough research already out there to suggest daily hand stretch exercises for those whose hands are affected by scleroderma to commit to doing stretches daily and that this study has already shown that these exercises are manageable and not too arduous for most to add to a daily routine.
Hand Exercise Guide:
1. Touch the tip of each finger with your thumb in turn and then stretch out.
2. Touch your thumb to the base of each finger and run the thumb up to the tip.
3. Stretch your fingers out, separate your fingers and then bring back together.
4. Place your hands down on your thighs/table, bend from the knuckles keeping your fingers as straight as possible.
5. Keep your elbows tucked into your side, bend your wrist backwards and forwards
6. Place your hand palm down. Lift each finger up using the other hand.
7. Bend top joints of each finger; keep knuckles straight and then stretch out.
8. Keep elbows tucked into your side and turn palms up and down.
9. Make a fist and then stretch the fingers out. Try to curl the fingers down from the top.
10. Put your hands together (as if in prayer) make a diamond shape by keeping the wrists and finger tips together – just moving the knuckle joints.
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SCLERODERMA AND RAYNAUD’S NEWS
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Local Support Contacts Bedfordshire Rita Boulton rita@sclerodermasociety.co.uk 01767 312 544
Hampshire Tracey James tracey@sclerodermasociety.co.uk 02392 677 476
South London Celia Bhinda celia@sclerodermasociety.co.uk 020 8698 6294
Buckinghamshire & Hertfordshire Marilyn York Marilyn@sclerodermasociety.co.uk 07702 592 387
Lancashire & North West Yorkshire Sheila Procter Sheila@sclerodermasociety.co.uk 01282 429 004
South Wales Belinda Thompson Belinda@sclerodermasociety.co.uk 02920 625 056
Burton on Trent Helen Nutland Helen@sclerodermasociety.co.uk 01283 566 333 x5247
Merseyside Diane Unsworth diane@sclerodermasociety.co.uk 01925 222363
Surrey Nicky O’Shea nicky@sclerodermasociety.co.uk 01483 764 524
County Durham and Teeside Jessie Pickering 01388 527 840
Newcastle and Northumberland Lindsay Wilkinson Lindsay@sclerodermasociety.co.uk 07880 238 213
West Midlands Jane Beach jane@sclerodermasociety.co.uk 01527 459 552
Norfolk Lucy Reeve lucy@sclerodermasociety.co.uk 01508 538342
West Sussex Lesley Dodd Lesley@sclerodermasociety.co.uk 01903 753 971
North East Scotland Susan Wilson susan@sclerodermasociety.co.uk 07740 185 627
Wiltshire and North Hampshire Lynn Morton lynn@sclerodermasociety.co.uk
Derbyshire, S. Yorkshire, Staffordshire & Cheshire Lynette Peters lynette@sclerodermasociety.co.uk 07947 350 815 Diana Twigg Diana@sclerodermasociety.co.uk East Midlands Cheryl Darch Cheryl@sclerodermasociety.co.uk 01162 717 180 East Sussex Rosanna Clifton Rosanna@sclerodermasociety.co.uk 01424 426 738 East Yorkshire Lynn Hind lynnh@sclerodermasociety.co.uk 01482 354 312 Exeter Michael Corbett mikec@sclerodermasociety.co.uk 07918 178 613
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North Wales Kate Owen kate@sclerodermasociety.co.uk 01492 515 834 Oxfordshire and Berkshire Melanie Bowen 01865 517 033 Plymouth Anne Sheere anne@sclerodermasociety.co.uk 01752 338 156 Somerset & Gloucestershire Judith Foster Judith@sclerodermasociety.co.uk 07985 335 336
Helpline: Although The Scleroderma Society can not offer medical advice, they operate a free helpline, offering a kind ear. We will help in any way we can between 09:00 and 19:00 every day.
Call 0800 311 2756 SCLERODERMA AND RAYNAUD’S NEWS
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Nurse Advice Lines Royal Free, London
Sally Reddecliffe & Adele Gallimore (For Pulmonary Hypertension Enquiries)
020 7472 6354
Royal Free, London
Specialist Nurses
020 7830 2326
Manchester
Specialist Nurse Team
0161 206 0192
Leeds
Specialist Nurse Team
0113 3923 035
Liverpool
Jan Lamb
0151 529 3034
Newcastle Upon Tyne
Karen Walker
0191 223 1503
Belfast
Audrey Hamilton
02890 561 310
Portsmouth
Paula White & Julie Ingall
02392 286 935
Sheffield
Jayne McDermott
0114 2713 086
Royal Brompton
Lucy Pigram
0207 352 8121 Ext7112
Dundee
Steve McSwiggan (Available Mon, Tues & Weds am)
01382 383 233
Bath
Sarah Smith
01225 473 458
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.
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RAYNAUD’S & SCLERODERMA ASSOCIATION Mawdsley House, 112 Crewe Road, Alsager, Cheshire ST7 2JA Telephone: 01270 872776 info@raynauds.org.uk www.raynauds.org.uk
THE SCLERODERMA SOCIETY Bride House, 18-20 Bride Lane London, EC4Y 8EE Telephone: 020 7000 1925 info@sclerodermasociety.co.uk www.sclerodermauk.org The Scleroderma Society © Copyright 2015. All Rights Reserved
Raynaud's & Scleroderma Association © Copyright 2015. All Rights Reserved
We would appreciate your feedback on our joint newsletter. What did and didn’t you enjoy in this issue? What would you like to see more of and less of? Please let us know at the RSA’s Head Office by phoning 01270 872 776 or emailing info@raynauds.org.uk. Thank you.
Disclaimer The Raynaud’s & Scleroderma Association (RSA) and The Scleroderma Society (SS) do not endorse or recommend anything (including any products or services) which may be featured, used or referred to in this newsletter. Use of any such products or services or participation in any clinical trials or events are entirely at your own risk. Any views, opinions or statements expressed in this newsletter do not necessarily represent those of the RSA or the SS and they cannot be used for advertising purposes. Any information provided is simply for the convenience of readers and the RSA and the SS will not be responsible for the content, accuracy or availability of these products, information or services. Advertisements for products or services are not endorsed by the RSA or the SS and persons diagnosed with Raynaud’s or scleroderma, or suspecting these illnesses, should always consult with their own doctor to ensure proper evaluation and treatment. Please exercise your own judgement about whether or not the item or service advertised is likely to help you personally and, where appropriate, take professional advice from your doctor, nurse, physiotherapist or occupational therapist before buying or trying something. Copyright This newsletter is the copyright of the Raynaud’s & Scleroderma Association and The Scleroderma Society. All rights are reserved. No part of this publication may be reproduced or transmitted in any ways or by any means, electronic or photocopying without prior permission of the copyright holder.