Scleroderma
News May Issue 2015
The Scleroderma Society is a registered charity: 286736
In this Issue A round up of the treats we have in store for you, in this issue of Scleroderma News... Pg. 2. Welcome Pg. 3 & 4 Society News & Annual Conference Pg. 5 & 6. Skin Care & Aloe Vera Pg. 7 & 8 Taking control of my life Pg. 9– 12. Fundraising & Donate
2015 art competition winner, Aspa Palamidas
Pg. 13 & 14 Research & Prescription Rates Pg. 15 & 16 Doc Spot & Hello from Spain Pg. 17 Local Support Group News & Competition Pg. 18 & 19 Contacts
Join us on Twitter: @sclerodermauk Disclaimer: Views expressed in Scleroderma News are not necessarily those of the Scleroderma Society, nor the editorial Board of Scleroderma News. No responsibility or liability will be accepted, either for their contents or accuracy in Scleroderma News. Products, treatments and services on the website and in Scleroderma News are not necessarily recommended by the Scleroderma Society. The Scleroderma Society is not equipped to test and approve products, treatments and services available to the general public. 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. Scleroderma News: Welcome
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Hello and Welcome to Our May Edition of Scleroderma News Welcome to the May edition of Scleroderma News. I imagine I’ve not been alone in regularly dreaming about the arrival of spring/summer. Well, to be honest, since September last year, getting through to the summer has been one of my focus points through the winter months, and the recent advent of blue skies in my part of the country has brought considerable joy in our household. I hope you may have been able to experience that, too. I can share with you several recent pieces of news. Let’s start with the farewell, to our trustee colleague John, who due to incessant professional commitments, has decided he is not currently in a position to offer full service as a trustee, and will move away from being a trustee, and support the Society in other ways, such as providing advice to the board where appropriate, and other volunteering opportunities. We thank him for his valued contributions to date. Moving on to the future, we would also like to share with you the news that the due diligence process that we explained about and embarked upon at the time of the last newsletter, has been successfully and positively concluded. The due diligence process was the initial stage of our activity in considerations about whether a merger is an appropriate course of action for the two organisations. The process provided the trustees of each charity with a full and detailed report as to the commercial, financial and legal standing of both charities. The positive report has put the trustees into a position where they can now adequately consider and plan the most appropriate course of action for the future of the charities, though it continues to be business as usual with the day-to-day running, aims and missions of both the Society and the RSA. Speaking about the charity’s aims brings me on to the topic of World Scleroderma Awareness day (29th June), which is our opportunity to tell everyone and anyone all about scleroderma to spread awareness of the condition: we target the general public, healthcare professionals and the media. Every year the event gains momentum and the reach of its impact; turn to page five for more details about what is planned for this year and do contact us if you would like to get involved in some way; we would be delighted to hear from you. Wishing all our supporters, volunteers, friends and family a very lovely summer.
Susie x
Scleroderma News: Welcome
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Society News We’re accredited by the Information Standard! The Information Standard is a certification programme for organisations producing evidence-based health and care information for the public. Organisations that adopt the Information Standard are demonstrating their commitment to trustworthy health and care information as well as providing assurances of the quality of their internal processes.
Individual Funding Request (IFR) An IFR is a request made on behalf of a patient, by a clinician, for funding of specialised healthcare which falls outside the range of services and treatments that the NHS has agreed to fund. It has become evident that this process does not work for some people with scleroderma. In Northern Ireland the Minister for Health Social Services & Public Safety are assessing the process. We have voiced our concerns via the consultation to ensure that changes are more supportive to people with scleroderma. Again, head to our website to read When you see the mark on any of our materials, you can be our views. assured that our information is reliable and creditable. This will help you make informed decisions, for yourself and for Awareness raising with health professionals your family, when it comes to considering health and care In April we attended the British Society for Rheumatology (BSR) annual options. conference—Rheumatology 2015.This is the largest conference of its kind in the FESCA AGM In March the Scleroderma Society attended the FESCA AGM UK with over 2,000 health professionals in Brussels. This was a brilliant opportunity to share the coming together to discuss key topics wonderful work that the scleroderma organisations are doing and share best practice. Vice-Presidents around Europe. The Scleroderma Society shared the plans for Professor Ariane Herrick & Chris World Scleroderma Day, which you can read about on page 4. Denton lead key scleroderma sessions, We are delighted that the European organisations are keen to which were extremely informative and be involved and we hope that this year, with your engaging, and Nicola Whitehill spoke at a session providing the patient involvement, will be a truly ‘world’ campaign. perspective of living with scleroderma. Chloe Kastoryano and Amy Baker also attended to share information booklets and publications with the health professionals. Reaching out to nurses This year we will be exhibiting at the British Dermatological Nursing Group conference, the largest dermatology nursing event across the UK. NHS England has recently consulted on 2 documents: 1. The development of a policy for commissioning Sildenafil and Bosentan for treating systemic sclerosis patients with digital ulcers. The development of the policy presents a massive success for scleroderma. The Society is delighted that patients in great clinical need should now be able to have access to this treatment. The Scleroderma Society is extremely supportive of this policy and responded accordingly. 2. The process for commissioning specialised health services, such as scleroderma. We have provided an in-depth response to this document, as it is evident that more needs to be done for scleroderma and other rare diseases.
Alongside, this the Scleroderma Society are also featuring in Nursing in Practice the most widely distributed magazine to nurses. We have received a full page advert to raise awareness of Raynaud’s and scleroderma whilst encouraging nurses to join our online medical community to receive specialist scleroderma information. EULAR is heading to Rome This year’s annual rheumatology congress will beheld in Rome, 10-13 June. We are delighted that Kim will be attending to present a poster on the importance of patients working with their healthcare professionals to improve outcomes. Look out for an update in the next edition of Scleroderma News.
To read our responses then head to our website or call the office. Scleroderma News: Society News
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World Scleroderma Day 2015 Theme: ‘Unveiling Scleroderma’ Throughout the month of June we will be organising a Scleroderma Association. To find out more and book your range of celebration events in the run up to World place see the article below. Scleroderma Day 29th June. The 25th June will see the Scleroderma Society collecting at This year Amy Baker, our Charity Development Manager, is Waterloo train station. This is the first time the charity has leading the FESCA campaign for World Scleroderma Day organised such a community collection and we would love for ensuring the Scleroderma Society is at the heart of national some of our wonderful volunteers to come and join us to and global events. raise as much money as possible for the charity. If you are interested in joining contact Amy Baker: 020 7000 During May, you can…. 1925 or amybaker@sclerodermasociety.co.uk 1. Visit our World Scleroderma Day website, sclerodermauk.org/wsd On the 30th June we will be heading to European Parliament 2. Download a letter to invite your local MEP to attend to unveil scleroderma to MEPs, stakeholders, policy and our European Parliament event, aiming to tackle equity decision makers. Attendees will hear from patients, specialists to care and quality treatment across Europe. and patient organisations and we hope to challenge equity for 3. Visit the main World Scleroderma Day website to view rare diseases. events across the world: worldsclerodermaday.org 4. Prepare to join a global video campaign—25 seconds Art Competition for 2.5 million diagnosed individuals worldwide. Keep sending your art work in. Send your photograph, painting, On the 1st June a global video campaign will be launching. drawing or even sculptures to: Art We would like to encourage you, your family and friends to Competition, The Scleroderma record a 25 second video to ’unveil scleroderma’ and show Society, First Floor Bride House, what life is like living with scleroderma or knowing someone 18-20 Bride Lane, London EC4Y with scleroderma. All the videos will be pulled together on the 8EE. main WSD website so you can view activity from across the Deadline extended: Friday 29th globe. May. Winner to be announced at To help spread the word we will be holding recording days at the conference gala dinner. our office and at the Royal Free Hospital. Keep an eye on our WSD website for further details or contact Amy Baker. sclerodermauk.org/wsd On the 20th June we will be ‘unveiling scleroderma’ at our first ever joint annual conference with the Raynaud’s and
Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard),
Scleroderma & Raynaud’s Unveiled Joint Annual Conference 2015 Barnes Wallis Building & Macdonald Hotel, Manchester, 20th June, 10:00-17:00 Our joint annual conference is nearly here! To avoid disappointment book www.raynauds.org.uk/unveiled. Alternatively call the office or complete the booking form.
your
ticket
online
today:
This event is free to members of the Scleroderma Society and RSA, £20 to non-members. Barnes Wallis Building, the University of Manchester, Altrincham St, Manchester, M1 7JR The Gala Dinner will follow the conference. Prizes will include the following: Volunteer of the year Local support group of the year Fundraiser of the year; supporter of the year Supplier of the year Art competition winner (deadline to enter 20 May) The dinner will be held at the MacDonald hotel (0.1miles from the conference venue). Tickets are priced at £40 per person. Held as part of WSD 2015. Scleroderma News: Annual Conference
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Skin Care
All with systemic sclerosis will develop some skin This new technology utilises short bursts of high energy light changes. The severity and the problems created by to obliterate the broken blood vessels. This treatment will the changes will vary greatly. cause some stinging sensation on the skin and will leave some bruising for seven to ten days afterwards. It may take three 3 Below are some potential symptoms which you may to 4 treatments to work fully. This form of treatment is develop from your scleroderma, and some ways to generally available from specialist hospital departments, and treat them. may require special funding. Cosmetic camouflage is an effective alternative to cover the Skin Tightening telangiectasia. Changing Faces offer tremendous help with this, Tightening of the skin is a fundamental problem in systemic and your local dermatology department can put you in touch sclerosis. There are several medicines which may be of benefit, with a trained volunteer. these would normally be prescribed under the supervision of a hospital specialist. New medicines are constantly being Calcium deposits developed. Calcinosis means collection of insoluble calcium salts within or Physiotherapy and exercises are important to maintain skin beneath the skin. It often occurs in people with systemic movements around joints. Warm paraffin wax baths can also sclerosis, especially with the limited type. Calcinosis tends to be useful to relieve tight, painful hands and to enable easier occur over pressure points, for example at the finger tips. exercising. Soaking in warm water with a few drops of a liquid Usually calcinosis is obvious on examination, and so no special paraffin-based oil may help to soothe and relax painful hands tests are required. However, if your doctor is not sure then and feet. an x-ray may be arranged – this will demonstrate calcinosis very clearly. Ulceration If calcium deposits cause no discomfort, then it is quite safe to It is not uncommon for people with systemic sclerosis to leave them alone. If they cause discomfort or ulcerate and develop an ulcer. These are commonest on the fingers and become infected, then they can be removed by simple surgical toes. Prolonged or very frequent Raynaud’s spasms can techniques. There is no guarantee that the deposits will not damage areas of tissue leading to ulcers. These are breaks in reappear. Occasionally these calcium deposits can discharge the skin. They occur commonly occur at the tips of fingers or from the skin spontaneously. Paraffin wax baths may over pressure points, for instance over joints where the skin is encourage this. In summary, skin problems are common in especially stretched. These can be painful and prone to systemic sclerosis but there are simple practical solutions to infection. many of them. Ulcers may also occur on the legs, often following trauma, Sometimes infections can develop around an area of calcinosis, such as a knock with a shopping trolley. One should take care requiring antibiotics. to avoid such knocks and small changes such as wearing trousers or a thicker pair of tights or socks may be enough to prevent the skin from being broken. If a leg ulcer does develop Skin Care - 4th June: Blackfriars, London it can take longer to heal because the skin is not as healthy. Ulcers should be dressed regularly; the frequency with which We will be holding our first ever practical skin care session on the dressings are changed will vary. Dressings help in several Thursday 4th June from 5:30pm—7:00pm. This session will ways; they alleviate pain, contain any discharge, and prevent focus on simple things you can do at home to manage the afdirt and infection from entering the wound. It is also believed fects of scleroderma on the skin. We will be receiving a that there is an optimum moisture level to help with healing. presentation from Louise Parker, Lead Nurse (RFH) as well as There are many different dressings available to try and provide a presentation from Changing Faces with the opportunity to the correct moisture level at the wound bed. Again the choice test products. of dressing will be dictated by the type of ulcer. For ulcers on the fingers and toes a dry dressing is often all that is needed. If you are searching for new ways to manage your scleroderHealing may be promoted by helping the blood to circulate ma and learn from others diagnosed then our specialist evenfreely using drugs such as vasodilators which can be given in ing sessions could be perfect for you. oral forms such as Nifedipine, or intravenously e.g. prostacyclin (Iloprost®). The intravenous form is only available Call 020 7000 1925 to from certain specialist rheumatology units, but can have good book your place or find effects on difficult ulcers on the fingers and toes. Ulcers may out more. sometimes become infected and will require a course of oral All attendees will receive a antibiotics such as flucloxacillin. skincare goody bag. Telangiectasia These are burst blood vessels visible as small red spots. They may develop on the face and hands. Many are keen for treatment. Pulsed dye laser treatment can often be helpful. Scleroderma News: Skin Care
Session costs £5 to cover admin and refreshments.
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Aloe Vera
My name is Penny. At the age of 13 I was diagnosed with scleroderma. At that stage it was external and only affected my skin causing hardening of the skin and it was kept under control for many years with steroid creams. About five years ago, thirty years on from the original diagnosis, the disease attacked with a vengeance and I was in and out of hospital seeing various specialists. The future looked bleak. The disease was now attacking my internal organs and bones. I suffered with constant abdominal pain and discomfort, IBS/Crohn's like symptoms and Raynaud's disease. My specialists treated the symptoms with heavy medication like Loperamide, Amiltriptyline, Codeine, Cyclizine, Co-Codamol and regular courses of antibiotics, whenever there was a build-up of bacteria in my bowels. In addition to this, I was still using the steroid topical cream.
I worked as a 24 hour agent in the Utilities industry and had to commute daily between Swindon and Reading. I went off on long term sick for just over 6 months and when I returned, with the support of the Company I work for, was relocated to Swindon as I was now incapable of the commute. I did not have a quality of life as I was in constant pain with severe bouts of diarrhoea and was in a continuous daze from the heavy medication. Some days, I found it difficult to even dress myself. I couldn't travel long distances due to the IBS symptoms and therefore for years we did not have any holidays. It was difficult enough just trying to get to work every day without an incident. My illness controlled every aspect of mine and my family's life. The medication provided very little relief. By coincidence, as a vegetarian, we were doing some research as we decided that we would like to replace all, if not most of our household products with products that are
free from animal testing. This is when we came across a particular brand of Aloe Vera product, who do not test on animals and also use a cold press manufacturing process thereby retaining all the vitamins, minerals and goodness of the plant in their products. What we did not bargain for was how I would benefit health wise from the drinking gels. I started the Aloe Vera drinking gel and my world changed. I noticed after approximately two weeks, that my symptoms seemed to be easing up and I started to feel a whole lot better. The constant abdominal pain I had experienced for years subsided and there was no longer an urgency to get to the nearest rest room. After a further couple of weeks, I made a decision to stop my medication. Of course, I didn’t tell my family!!!! Guess what, I had one good day after another. I felt incredible, no pain and full of energy and more importantly.....no diarrhoea! So six months on, still off my medication. I have changed to the Bits N' Peaches gel (only because it is more palatable) and I have still not had any incidents. I have also stopped using the steroid creams as long term use causes thinning of the skin. Instead I use the Aloe Propolis Crème which has left my skin feeling soft and supple and there has not been any further growth of the hardened skin. I have not had my annual check-up with Dermatology at the hospital as yet, but look forward to hearing their comments. We have gained so much already from using these products from having a clear conscience that no animal has suffered, to my amazing health benefit that I thought I would never experience again and the improvement to our family life. We are so, so fortunate. Penny will be at our annual conference and will welcome any questions.
A bit about Aloe Vera… Aloe vera is mostly used for skin conditions—there is some evidence to support its use for minor skin problems and some people use aloe vera to help heal and soothe burns. Aloe vera squeezed directly from the leaves of the plant can be put straight onto your skin to help heal minor cuts, scrapes and burns. Some people have an aloe vera plant in their home to use in this way. Aloe vera can also come in a gel, cream, latex, juice or capsule form. In many countries, including the UK, aloe products are also available as dietary supplements and some are sold as treatment for constipation. Always speak with your doctor about any supplements that you are considering using. Source: Cancer Research UK
Exclusive for Society members—Look out on our Facebook and Twitter next week for exclusive aloe vera discounts! Contact the office if you’re not on Facebook or Twitter. Share your story
If you use aloe vera products and noticed benefits to your scleroderma then we’d love to hear from you. Scleroderma News: Aloe Vera
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Taking Contr EULAR, the European League Against Rheumatism, hold the Edgar Stene Prize competition annually. People with rheumatic conditions, such as scleroderma, are invited to enter & share their story. This year entries had to use the title: ‘Taking control of my life, working together with health professionals to achieve my personal goals’. We were delighted that Nicola Whitehill (pictured), Scleroderma Society member, entered the competition this year. Nicola describes her story of being diagnosed with scleroderma and her daily battle to remain in her studies to pass her postgraduate examinations in law. Working with her health professionals Nicola details how she was able to manage her symptoms to ensure they didn’t prevent her from qualifying. To read Nicola’s inspirational story please head to our website. Nicola unfortunate didn’t win the competition despite her very strong entry. The winning essay this year was from Denmark. Commiserations to Nicola and we wish you the best of luck next time around. If you would like to enter the competition next year then please do let the Scleroderma Society office know. The winner is invited to attend the EULAR Annual conference, which this year is being held in Rome, flights and 4 nights accommodation are also paid for.
Feeling Good
hypothyroidism, steroids and other medications. I enjoy the group - it inspires me and I’ve made many friendships. My health has improved so much.
How I took control of my life, by Lynn Hind (pictured I am aware that being in work can be extremely beneficial for below) your state of mind—your mental wellbeing—and so I was I was diagnosed with scleroderma 8 years ago. Up to that keen to get back out there. As a consequence of my health I point I was a nurse of 30 years. Sadly I had to give up the knew paid employment was not an option for me and so profession I loved and sidetrack into hospice work as a part- decided to try volunteering instead. I approached a local time assistant manager for 5 years. This was totally different charity shop and spoke to the manager. I told her about my but I still loved it. Not long after I sadly lost 2 much loved scleroderma and what it involves. I filled in the application parents, both within 25 weeks of each other, and my husband form, went for an informal interview and got the job! also required 2 new hips replacements This all happened within a year and it was overwhelming. A renal crisis on top of The beauty of my role is I can do as much or as little as I feel I that almost put me on my knees - it almost over took me. I can. If I have a health blip or a hospital appointment it is ok, I subsequently put on a lot of weight and felt I really could not don’t have to go. Also, I am out there being productive and fight anymore. I wanted to give up and for the first time since feeling valued. I can give and socialise with others again. I can diagnosis I felt I was utterly beaten and at rock bottom. I had be “NORMAL”. It lifts my spirits, I can be myself with something to say, have a laugh, share stories and not be a lost ME. scleroderma victim angry at the injustice of it all and what’s It is so easy to sit at home thinking the injustice of it all, and been cruelly robbed. This is the biggest plus for me. why me? It is easy to let it get you down and feel depressed. Charities rely heavily on volunteer support and in helping them in some small way they may help you too! It is open and friendly, you only have to say what you are physically able to do and there is It is that very mindset that I believe can do the most damage. no pressure to perform a task you Before scleroderma we where all active, vibrant, worthwhile are not capable of. Plus if the people. We still are those people with so many valuable opportunity arises you can educate qualities to offer. It is our bodies that are sick, not our minds. people about scleroderma and help raise awareness. I decided to not give in and to do something about it. Firstly, I I choose to wear scleroderma. joined my local Slimming World group to tackle my weight. I It will never wear me or rob knew I needed support to do it. So far, in just over a year, I me of who I was or am. have lost over 3 stones. This is despite being on I’ve got ME back! I personally feel scleroderma can, and does, rob us of our physical strength. But most cruelly, and most importantly, it can rob us of our emotional strength. We sit at home isolated, misunderstood and waiting for the next symptom. What is scleroderma going to do next?!
Scleroderma News: Taking control of my life
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rol of My Life
Massage Massage is the rubbing and kneading of muscles and joints of the body with the hands, especially to relieve tension and pain. A massage can promote relaxation and well-being. For thousands of years people have benefited from the power of massage. Changes in the body and mind have been attributed to healing which takes place through the exchange of human energies. There are several types of massage: Swedish massage – most common type of all over body massage Aromatherapy massage—includes the use of essential oils Deep tissue massage – used for long standing, deep muscular problems Sports massage – used before or after sport or to help heal sports injuries Shiatsu—based on traditional Japanese massage therapy. The word shiatsu literally means finger pressure. It has become popular in the Western world over recent years. Neuromuscular massage – helps to balance the nervous system and the muscle Reflexology – applied to points on the hands and feet with the aim of improving the health of other parts of the body
Massage techniques can range from being soft and gentle to vigorous and brisk and can sometimes even be a bit uncomfortable. Gentler forms of massage such as aromatherapy affect your nerve endings, possibly releasing chemicals called endorphins and reducing sensations of pain. Stronger methods, such as Swedish massage, aim to stimulate your blood circulation and lymphatic system, relax muscles and ease knotted tissues that can cause pain and stiffness. Massage therapists may treat your whole body, or concentrate on a specific part of the body such as your head, neck or shoulders. Some types of massage such as shiatsu may also gently stretch parts of your body to release stiffness. There are many reasons why people may use massage— some to help relax or cope with stress and anxiety, others may have them to relieve pain. Generally, massage therapy can help lift your mood, improve your sleep and enhance your wellbeing. There is evidence to support these benefits. Scleroderma Society member, Lynn, a massage therapist for New Heights, offers discounts to Society members. Lynn’s father suffered from scleroderma and really benefited from the massages. Lynn is keen to offer other scleroderma suffers her service in the hope that they too will benefit as much as her father did. “As someone who has scleroderma, I can only say that visiting Lynn was incredibly beneficial, not only physically but mentally and emotionally too.
50% DISCOUNT FOR MASSAGE THERAPY FOR SCLERODERMA AND/OR RAYNAUD’S SUFFERERS.
The room was a tranquil haven, with a heated blanket and gentle music. Lynn massaged my sore and stiff body until it felt like a cloud! I slept better afterwards and my body felt so much better, with my skin softer and joints more mobile. A truly therapeutic nurturing experience… thank you Lynn!”
These illnesses present in a variety of ways so my massage therapy is tailored to the individual’s symptoms and drug treatment. I use natural oils to moisturise the skin to reduce dryness.
TO BOOK AN APPOINTMENT OR FOR MORE INFORMATION PLEASE CALL LYNETTE ON:
01276 491070 / 07810004227 Based at: Blackwater & Hawley Leisure Centre - Hawley Green, Blackwater, Camberley, Surrey, GU17 9BW Email: lmnewheights@gmail.com
www.newheightstherapy.co.uk LYNETTE BUTLER Dip ITEC, MCThA
Scleroderma News: Taking control of my life
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Summer Cycle On Sunday 2nd August thousands of cyclists will once again be taking to the closed streets of London and Surrey to complete a 100-mile cycling challenge. The Prudential Ride London – Surrey 100 starts in Queen Elizabeth Olympic Park with a route winding through the city and into the stunning Surrey countryside. Cyclists will finish at The Mall in central London, shortly before 150 professional cyclists race in the Prudential Ride London – Surrey Classic.
Our team will be cycling together to provide a better quality of life for individuals diagnosed with scleroderma. The Scleroderma Society is only able to continue our vital support, campaigning, awareness raising and research through fantastic individuals fundraising for us. Will you make a change this year and help us with our vital work by joining the Prudential Ride London 100 and raising a minimum sponsorship of just £750.00? If you are unable to cycle then please think of a friend or family member who could support the charity and pass this newsletter on to them. Victoria Bale said “Riding around the sights of London with no cars and riding up the Mall with loads of cheering spectators was amazing”. Victoria enjoyed her ride so much that she has signed up again for 2015. Join Team Scleroderma 2015 Visit the “Support Us” www.sclerodermauk.org
section
on
our
website:
Speak to a member of our team to receive an application form by email or post. fundraising@sclerodermasociety.co.uk
020 7000 1925
Victoria Bale at the finish line, looking triumphant with her medal
"As you are aware, Scleroderma is a condition that very little is done for and so when I was diagnosed, Akbar, my younger brother, felt that he should do his bit to raise some money as well as awareness. Myself and Akbar have always been very close and as my younger brother, he felt quite helpless when he learnt of my diagnosis. Akbar has never participated in a 5k let alone a 10k!- he has found it very challenging sticking to his strict training regime- but has kept up the hard work and has reached his goal time which he will hopefully beat at this weekends 10k. He found it peculiar that people had not come across this condition before, which often made it hard to raise funds, but as he informed more and more people about scleroderma, he was sooner reaching his target and he was as motivated as ever. Akbar Shah
He set himself a goal of £1,000, with the hope of raising at least half but has just reached this 1k target and we are all so proud of him!” Aimen Shah If you would like to help Akbar reach £1,000, you can find him on the Just Giving website. Akbar Shah
Scleroderma News: Fundraisers
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London Marathon Round-Up It was an early morning start for all the runners and spectators as everyone was trying to get the best spot at the start line or on the cheering route. This year the charity cheering point was at mile 13 which is also mile 22 on the Highway. The atmosphere was electric with a music truck keeping the spectators and runners going through the event. We managed to see all of our five runners come past, Ian Cox, Lee Maxwell, Greg Tytherleigh and Josh Levy and Eli Myers, who had met on route and were running together. It was a proud moment to see all five of our runners come sprinting past with their scleroderma society vests, whilst we waved and cheered them on. It was another amazing year at the Virgin Money London Marathon and a big thank you and congratulations to all of our runners. Lee Maxwell taking on the London Marathon like a true warrior, even donning the war paint.
Team Scleroderma Results 3:58:57 Ian Cox 4:23:32 Lee Maxwell 4:16:47 Greg Tytherleigh 6:58:32 Josh Levy 6:58:39 Eli Myers
Greg Tytherleigh writes about his day: hesitate. It won’t get any easier and it is “The dust is still settling and the legs are a truly life-changing experience. Run and still aching, but I wanted to write to become. thank you. I also wanted to share something special Running was one of the best things I have from the day with you. done in my life and I know my mum would have been proud. It was a real My family were in the crowd at privilege for me to be able to take part Westminster, with their Scleroderma tand I was delighted with my time and the shirts and balloons. A lady, perhaps in her 30’s, approached my wife Sarah and fact that I ran the whole distance. my aunt Hilary to talk about The fund raising has been so very special Scleroderma. They explained that I was and I have been amazed by the number running, in memory of my mum, as my of people that have come forward to step-dad Richard did before and that we sponsor me and by their fantastic had raised over £40,000 for the generosity. It’s truly humbling. I set my Scleroderma Society. Her reaction was target at £5,000 thinking that it was simply to hold out her gloved hands a say unrealistic, but a big number might a truly heartfelt thank you. encourage people to donate more. With this in mind I can hardly believe that the Just helping this one person on the day total is over £8,750 now and still has made everything worthwhile. Like I say, I am privileged to be able to run and counting. to do so to help anyone with The run was amazing and the support Scleroderma is an honour for me. from the crowd is better that you can imagine. It’s like being a celebrity for a Thank you so very much for the day and speaking of which, I did meet opportunity you gave me, which has Chris Evans on the way round and shook been so very valuable and will stay with his hand - just before I overtook him and me always.” left him in my wake! He’s a really nice guy though. The other characters I met Greg proudly showing were Pamela Anderson, the Mona Lisa, his medal one of the Rhinos, Jesus, a tardis, a toilet, a wolf, a lion, a gorilla, a frog, Thor and a man in a big pink dress! How these people even get round in anything other than normal running kit is absolutely astounding. As I say, my legs still hurt and they are giving me a Hard Stare, but the joy of the day was so worth it and I would definitely run again. If there is anyone out there even remotely considering doing the London Marathon, don’t even
Greg jumping for joy as he makes his way around the L o n d o n Marathon 2016
Inspired to get your running shoes on? If Team Scleroderma 2015 have inspired you to run the Virgin Money London Marathon 2016 for the Scleroderma Society, we would be delighted to welcome you to Team Scleroderma 2016. You can apply for a Scleroderma Society guaranteed Gold Bond place, to apply please visit our website to register your interest: sclerodermauk.org/london-marathon or phone: 020 7000 1925 Scleroderma News: Fundraisers
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Mad March Mare On Saturday 7th March, Diane Shane-Stone rallied a team to take part in the 1st ever Mad March Mare in aid of the charity. Colin, Diane’s husband explains, “The Mad March Mare is a 10K Multi terrain obstacle course and we had decided to use this event as a fundraiser to raise funds for the Scleroderma Society. My wife Diane had been diagnosed with Scleroderma early last year. She has and continues to receive a course of Chemotherapy at the Freeman Hospital, Newcastle to attempt to keep the disease suppressed. She is a personal trainer and fitness instructor and she has a very motivated and loyal following. When Diane mentioned to her followers that she had the idea of the Mad March Mare there was a huge uptake. This resulted in there being 3 teams registered for the event, a total of 50 participants. Even suffering the disease she has remained positive and completely motivated to continue to live a normal life whilst acting as the driving force and role The event organiser, Challenge Northumberland, is currently model to all who participate in her fitness being trained by Diane and were so impressed with her sessions.” professionalism and positivity that she was asked to get involved in developing the training programme for the event. The event was a fantastic success. The 3 teams from Diane’s camp (The Wet Wedgies, The Skirts in Dirt & The Disco Ninjas) a total of £2706.21 has been raised. Thank you to all the participants for getting muddy and wet to raise a fantastic amount of money for the charity. £2706.21 will make a considerable difference. The teams taking on challenges as part of the Mad March Mare
Two Brothers Cycle 1000 Miles Nicholas and his brother Matt have completed a 1,000 mile cycle challenge from Malvern to Mont Blanc in aid of the Scleroderma Society. Their mum, Pauline developed scleroderma symptoms in the early 90’s but as with many cases was not diagnosed with scleroderma straight away. Nicholas and Matt cycled in memory of their mum who unfortunately passed away in May 2014. The brothers have never undertaken such a challenge and managed to complete the 1,000 mile cycle unsupported with campsites being their only rest bite from the exhaustion and conditions. The brothers are hoping that their challenge will raise awareness for scleroderma and raise funds for both the Scleroderma Society and The Brain Tumour Charity. So far Nicholas and Matt have raised £715.00 for the two charities. If you would like to show your support for Nicholas and Matt you can donate to their online fundraising page: http://uk.virginmoneygiving.com/team/Two.Brothers The brothers cycling in the mountains
Scleroderma News: Fundraisers
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Donate by Phone Regular Giving Now the Scleroderma Society have invested in a new database Have you ever considered becoming a regular system we are now able to take credit and debit cards giver of the charity? Well now is the time to sign up to payments via the phone. become a regular giver. Your regular donation enables us to plan our future expenditure to ensure that we are dedicating This means that if you would like to donate to the charity you more and more money each year to funding scientific and can now pop us a call on our normal number: 020 7000 1925 medical research. and we can process your donation over the phone.
A regular donation of £3 could: Fund the helpline for one day, ensuring every individual receives the support they need Help fund the production of a new educational booklet If you usually send a cheque in to the charity to donate or Help fund a research project increasing renew your membership then why not try giving us a call and scleroderma knowledge, furthering treatments and we can process your payment over the phone. brining us one step closer to a potential cure. By choosing this option not only is it environmentally friendly but is cost-effective for the charity, reducing administration time and cost.
Your £3 can help change a life. Will you sign up today to donate £3 a month.
020 7000 1925 sclerodermauk.org/donate
Celebrating 50 years together Congratulations to David and Celia on celebrating their Golden Wedding Anniversary. David and Celia organised a celebration dinner for their 50th wedding anniversary, with local musicians “The Pompey Pluckers” and enough cake for everyone.
David and Celia on their wedding day
David and Celia celebrating 50 years
Scleroderma News: Donate
night we had a blazing row & in desperation I shouted out "I was going to ask you if you would marry me", Celia then said "well ask me" so I did & she loudly replied "yes". Row now all over. So that’s how 50 years of a wonderful & very happy married life started. At our anniversary dinner one of the gifts from our son & daughter was a cushion which has emblazoned on it the words “Mr & Mrs Graham sharing the sofa since 27.03.65." We thought that was lovely because our grandson when he was quite young described a sofa as a" touching chair", which we think our life has been one of touching & sharing with each other.”
“We first glimpsed each in a room above the Star Inn Lake Rd Portsmouth (the whole area has been knocked down & redeveloped years ago) it was where the local jazz band played. The next time we met was at a Thank you for fundraising for the charity at your celebration party in the parent’s house dinner and for donating £520.00 to the Scleroderma Society. of a fellow apprentice of mine & his sister had brought along her work mate Celia. A few weeks later I was invited to make up a foursome & yes Celia was there, after a few dates, we then started going steady for about 4 years, then one David and Celia enjoying a dance 50 years after their first Page 12
Our Research The Scleroderma Society is committed to improving the lives of people affected by scleroderma. Your membership, donations and fundraising are vital to ensure we are able to make this happen. Over the years the Scleroderma Society has invested nearly one million pounds into scleroderma research. In 2014 we invested over £100,000 in to 4 exciting research projects, 1 of which is detailed below. We will keep you updated on their developments over the year. Inhibition of epigenetic readers In ve sti ga ti ng a p o s si bl e n ew therapeutic approach to reduce fi brosi s i n system ic sc l erosi s interstitial lung disease by studying gene activity in archived patient lung cells and lung tissue samples By Dr Gisela Lindahl and colleagues Royal Brompton Hospital/Imperial College London Background: Interstitial lung disease (ILD) is a leading cause of death in patients with systemic sclerosis (SSc), and no therapies are able to efficiently halt disease progression. Fibroblasts isolated from SSc-ILD lung divide faster, and are more resistant to so called programmed cell death (a natural process to clear unwanted or damaged cells), than fibroblasts from control subjects. SSc-ILD cells also produce more extracellular matrix, such as collagen, making the connective tissue stiff, and are able to contract like muscle cells (myocytes), and are therefore termed myofibroblasts. These processes result in fibrosis, or build-up of scar tissue, in the lung, making it hard to breathe. The characteristics and behaviour (phenotype) of the SSc-ILD lung fibroblasts are maintained over several cell divisions in culture, suggesting an underlying epigenetic cause. This means a semi-permanent chemical modification (“epigenetic mark”) of the DNA/protein complex called chromatin, which does not affect the genetic code as such, but which is still inherited from one generation of cells to the next. BETproteins detect and “read” specific epigenetic marks associated with certain genes, and translate these into signals of disease progression, e.g. in cancer. Inhibitors of BET-proteins, such as JQ1, prevent binding of the BETproteins to the epigenetic mark, which alters gene activity in such a way that they block the progression of certain cancers.
We hypothesise that BET-proteins are essential for injuryinduced changes in gene expression and fibroblast function leading to lung scaring in SSc-ILD. In this pilot project, funded by the Scleroderma Society, we will determine whether inhibition of BET-proteins by JQ1 reverses the abnormal gene expression, and whether the BET-proteins themselves are abnormally expressed in SScILD fibroblasts and lung tissue. We will use so called gene microarray assays, which can measure the activity of many thousand genes simultaneously, to determine the wider effects of BET-protein inhibition on fibroblast gene expression in SSc-ILD. We will also study the levels of BETproteins in lung tissue from patients with SSc-ILD, and compare this with tissue of healthy controls, to see if a difference in BET-proteins may be an underlying cause to SSc-ILD. Data is currently being collected and analysed, and a summary of results expected in late summer. While the preliminary data already looks promising, this relatively short project will provide essential additional information about the wider effects of BET-protein inhibition, and also important findings from patient lung tissue, to build on in the long term studies. These studies will reveal whether these inhibitors could be a potential anti-fibrotic agent in SSc-ILD.
We believe these inhibitors may also be efficient in preventing fibrosis progression in SSc-ILD. The project: In our preliminary studies, the BET-protein inhibitor JQ1 was able to reverse the myofibroblast phenotype, which had been artificially induced by the fibrosis inducer TGF-b. JQ1 could also reverse the abnormal fibroblast phenotype observed in SSc-ILD. Scleroderma News: Research
Image source: Pink Hope charity Page 13
Prescription Charges Increase to prescription rates On the 1st April the rates of prescriptions increased from £8.05 to £8.20 in England. This increase can have severe effects on individuals who rely daily on medications, particularly those with long term conditions, such as scleroderma. To combat these increasing costs the Prescription Charges Coalition (PCC) have been campaigning hard. The PCC consist of 40 charities representing millions of people with long-term health conditions, including the Scleroderma Society. Research by the PCC consistently shows that 1 in 3 people with long-term conditions such as asthma or Crohn’s and colitis in England do not collect medicine because of cost. Three quarters of those say their ability to work has been affected as a result. Jackie Glatter from the PCC said: “This further increase in the prescription charge is likely to worsen the significant impact
charges already have on people with long term conditions. “There is strong evidence which demonstrates that prescription charges act as a barrier to people with long term conditions getting the medicines they need.”
Tracy Keown, from Surrey, whose 21-year-old son had a stroke due to not being able to afford the warfarin he needed since having an aortic valve replacement, said “No parent should see their child nearly lose their life because a life-saving medication costs money, while nit lotion can be obtained for free.” People with long-term conditions deserve better. The current system of exemptions for prescription charges has not changed since 1968 and is outdated, arbitrary and unfair. The Scleroderma Society is working with the PCC in calling for everyone with a long-term condition to be exempt from charges so that they can manage their condition effectively to get on with their lives. If you have had difficulty in purchasing scleroderma prescriptions due to costs then please do get in touch.
To show your support please sign the online petition: www.prescriptionchargescoalition.org.uk Prescriptions remain free in Scotland and are currently being consulted on in Northern Ireland.
Prescription Prepayment Certificate If you know you’ll have to pay for a lot of NHS prescriptions it may be cheaper to buy a prescription prepayment certificate (PPC) – effectively a prescription 'season ticket'. A PPC covers you for all of your own NHS prescriptions, including dental prescriptions, no matter how many items you need.
There are two PPC options to choose from:
1. A three month PPC costs £29.10 and could save you money if you need more than three prescribed items in three months
2. A 12 month PPC costs £104.00 and could save you money if you need more than 12 prescribed items in a year How much can I save?
If you need two items each month you can save over £90 with a 12 month PPC If you need three items each month you can save over £190 with a 12 month PPC If you need four items each month you can save over £285 with a 12 month PPC
There are several payment options available. If you choose the 12 month PPC, you can pay for this by 10 monthly direct debit instalments. To apply for a PPC please visit the NSH Choices website or speak with you GP surgery, It is also worth checking whether you’re entitled to free prescriptions before you apply for your PPC. Source: NHS Choices Scleroderma News: Prescription Rates
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DOC SPOT
Chris Denton is a Professor in the Centre for Rheumatology at the Royal Free Hospital in London and runs the Scleroderma Clinic. His major research programme spans both clinical and laboratory scleroderma trials. I have read that one should have an ANA (anti nuclear antibody) blood test if Raynaud's becomes severe or if you develop Raynaud's after the age of 40. If this comes back positive does it always mean that you have scleroderma or can you have positive ANA and not develop scleroderma? Most patients with Raynaud's phenomenon (RP) have "primary RP" that is not associated with any underlying disease, Some patients do develop a related condition, such as scleroderma or another rheumatic or connective tissue disease (secondary RP). Some cases of RP have positive ANA and this is associated with increased chance of developing an associated disease over subsequent years, but many patients do not develop scleroderma. Research studies suggest only about 10% of such cases progress to scleroderma. Are Ganglions and Raynaud’s connected? Ganglions are soft gelatinous cysts related to joints that probably result from joint fluid accumulating in the tissues around tendons. There is no association with Raynaud’s phenomenon. Sometimes they are removed by surgery but often they improve or disappear over time without specific treatment. They are rarely painful but can be unsightly. I suffer from what used to be called CREST. I have several difficult symptoms but recently I found I had a longish lump on my lower leg (just as if I had been wearing tight socks, but I haven’t). There is a longish mark where this lump occurs. It is not painful and I only discovered it by accident. I have shown my Scleroderma News: Doc Spot
doctor and she wondered if it was to do with thickening skin due to my condition, but she is basically a bit baffled. Have you heard of others getting this sort of thing? Any ideas? In scleroderma of all types there is thickening of the skin and this occurs in distinct patterns and distribution depending upon the subset or type of systemic sclerosis or localized scleroderma. Lumps on the leg in a patient with limited cutaneous systemic sclerosis (the type of scleroderma also called CREST, especially in USA) could be due to a localised area of scleroderma developing or to calcified material being deposited under the skin (calcinosis). It is also important to consider that it might be an entirely unrelated process from scleroderma. I am sure these are things that your doctor has considered but sometimes further tests such as an X-ray, ultrasound scan or biopsy (small sample taken from the lump) are needed and you should discuss this with your doctor. I have scleroderma and like oth er s wi th a ut oi m m une conditions, suffer from chronic fatigue. I've heard that DRibose can be taken to combat chronic fatigue - what is it? is it safe? Is it available on prescription in the UK? D ribose (also called Beta-Dribofuranose) is a naturally occurring sugar that is important in energy production within cells. Normally the body makes D ribose from other more complex carbohydrates (sugars) and uses within cells. There have been some trials in chronic fatigue syndrome that suggest benefit of D ribose supplements by improving symptoms of tiredness. There have not been any trials in scleroderma. It is not available on prescription as it is
classes as a food supplement. It is possible that patients may feel better but this is hard to assess without formal controlled trial data as fatigue is difficult to measure. There is no safety concern with taking this supplement that have been reported. Are there any recommendations on the use of antibiotics or other medications before, during and after dental treatment for patients with scleroderma? Scleroderma affects the mouth, teeth and gums in a number of ways including reduction in the quality and amount of saliva (sicca symptoms) associated with inflammation or fibrosis of the salivary glands. In addition there is a thinning of the tissues around the teeth and gums that can lead to loosening or teeth and changes in the mouth and lips. Finally, some treatments for scleroderma such as drugs that suppress the immune system may reduce resistance to infection. These effects may lead to dental advice to take antibiotics to treat or prevent dental infection. In general treatment should be along the same lines as for patients that do not have scleroderma. There are no specific antibiotics that are recommended or contra-indicated in scleroderma so you can be advised by your dentist.
If you have a question for the Doc please email: info@sclerodermasociety.co.uk
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Hola desde España By Alexandra Portales Guiraud, President for the Spanish scleroderma association— Asociación Española de Esclerodermia (A.E.E) The Spanish Scleroderma Association celebrates this year its 20th anniversary. This nonprofit association was founded in 1995, in Las Rozas, a town in the west outlying area of Madrid, where our headquarters have always been based thanks to the important support of the City Council members over the years.
More informally, we promote casual meeting: ’Scleroderma Friends Café’, all over our country. The objective is to give the opportunity to all those who are not members to find out about the association, in a relaxed atmosphere. It also encourages our members to meet one another and stay in touch. The initiative has been successful in several large cities, including Madrid and Barcelona, and we hope that more and more patients propose new Scleroderma Friends Café gatherings in their region. Encouraging the involvement of members in the association’s life is a big challenge, and we are glad to see the numbers of those willing to actively participate is increasing.
The first years were quite difficult… next years were not easy either, and the present is far from being effortless. Everything looks like much more difficult for small associations, fortunately we have always been lucky to be supported by hardworking volunteers who had helped us with their knowledge in specific fields, and also with their enthusiasm. Thanks to them we have always been able to do our best to help scleroderma patients, within our limitations. Our priority has always been focused on scleroderma patients: informing, guiding and supporting them as well as their families. In this spirit, besides support groups that meet regularly, annually we organise two specific support and respite programs, one of them thanks to the collaboration of the Spanish Federation of Rare Diseases and the National Reference Center of Rare Diseases. Both programs about one week long. They are aimed towards helping people come to terms with their scleroderma, teaching them how to manage their symptoms and improve levels of self-esteem. This is all to achieve the overarching goal of improved quality of life. The programme consists of specific workshops and activities, along with spending time with other patients who speak the same language.
Scleroderma News: Hello from Spain
Increasingly, the Spanish Scleroderma Association is working with other organisations. We are members of several umbrella groups, at national and European levels, and so are able to engage in their activities. The Spanish Rare Disease Federation (FEDER) and the Spanish League Against Rheumatism (LIRE) enable us to join forces with other rare and rheumatic diseases to be more powerful and defend our interests in Spain. FESCA.aisbl (Federation of Scleroderma Associations, international nonprofit organisation) is making it possible to join efforts of Scleroderma Patients at European level to increase awareness and promote advancements in the field of scleroderma. This short article of the A.E.E. cannot finish without including my personal feelings. It is great to be involved in an active part of our great little scleroderma family. Besides the grateful satisfaction of my involvement and work with my companions, my voluntary hard work for near eight years at the Spanish Association and for three years at FESCA.aisbl, has provided me with the opportunity to discover other perspectives of life. I have been fortunate to meet many wonderful people all over the world, many I have developed friendships with and am glad to know that many of us have the same nice sensation. Ultimately, we are achieving the aims of this great little family—ensuring that people with scleroderma do not feel alone. Page 16
Local Support News & R.A.M Update SclSoc and RSA award - nominate your local support as support group of the year! Does your support contact or group deserve the award for support group of the year? If you have received excellent support, information and assistance. Then we want to hear from you. This is your chance to showcase the wonderful work of your support contact. Do you attend a local support group and think they should win? Please send an email, a letter or phone the office to let us know why. No more than 1/2 A4 page of text is required. Deadline for nominations is 30th April. The winning group will be announced at the gala dinner on the 20th June (following our annual conference).
Local Support Group Updates: East Anglia had their group get together on Saturday 18th April. It was a lively afternoon, starting with a session on chair based exercises led by retired physiotherapist, Margaret, which was followed by the usual chat over a cup of tea. The group enjoy meeting to swap experiences and meet others with scleroderma. The next group meeting will take place in September (TBC). The group will be sharing tips on caring for skin, eyes, mouth, hands and feet. If you are within striking distance of Felixstowe, where the group meet overlooking the sea, then please contact Jacky March. Sclero Search
Bedfordshire The Bedfordshire group is meeting again on Sunday 14thJune 2015 at 10:00am in Frosts Garden Centre Restaurant in Willington. Everyone welcome! Contact Rita Boulton if you’re interested in joining. Burton on Trent It was Burton on Trent’s 10th anniversary this year and to celebrate the group organised a wonderful meeting and invited, Amy Baker to speak about collaboration with the RSA and how working together can benefit members. Amy Baker said, “it was wonderful to meet Helen and the Burton on Trent committee and to see the amount of time and effort that they put in to ensure patients in the local area receive the best support possible. The evening was a great success with members enjoying performances from a local choir as well as presentations from Helen and Dr a local specialist. The amount of support received for the collaboration work with the RSA was overwhelming and we are dedicated to continue this work for the benefit of members.”
H G Q D Q L Y S S T Q R Z H O
S K E M E Q H E V E K S J Y Q
I C R N L S S R N R I L V P Q
S Q L I E U I U C A L A L E L
O P K E F T M L Y R O I S R J
R J X F R M I R A E P R Y T Q
E F I Z I O A C Z C R T X E T
L D E O C Y D O S Y O P A N F
C J T S N L Z E C L S L T S C
S U K A M F M X R R T O T I B
A I U P S E N E G M E B B O S
N D E Q B P Z G E Y A C I N N
S P E C I A L I S E D B L V U
R E S E A R C H G I M O A U B
AUTOIMMUNE
LOCALISED
SKIN
DIFFUSE
RARE
SPECIALISED
GENES
RAYNAUDS
SYSTEMIC
GENETICS
RESEARCH
TRIALS
HYPERTENSION SCLERODERMA ILOPROST
ULCER
SCLEROSIS
Become a Local Support Contact We would love to expand our local support groups. If you are interested in becoming a local support contact then please contact Amy Baker: amybaker@sclerodermasociety.co.uk or 020 7000 1925. Scleroderma News: Local Group News
K E U T L W L C I M E T S Y S
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Local Group Contacts If you are interested in meeting with a local group in your area please do contact the appropriate person below. To find out more about groups in your area please email: localsupport@sclerodermasociety.co.uk Please call our helpline if you require support —0800 311 2756 Bedfordshire Rita Boulton rita@ sclerodermasociety.co.uk 01767 312 544
East Sussex Rosanna Clifton rosanna@ sclerodermasociety.co.uk 01424 426 738
North East Scotland Susan Wilson susan@ sclerodermasociety.co.uk 07740 185 627
Buckinghamshire & Hertfordshire Marilyn York marilyn@ sclerodermasociety.co.uk 07702 592 387
East Yorkshire Lynn Hind lynnh@ sclerodermasociety.co.uk 01482 354 312
North Wales Kate Owen kate@ sclerodermasociety.co.uk 01492 515 834
Essex, Kent & East London Amanda Thorpe dollydumpling23@gmail.com 01702 344 925
Oxfordshire & Berkshire Melanie Bowen melanie@ sclerodermasociety.co.uk 01865 517 033
Burton on Trent Helen Nutland helen.nutland@ sclerodermasociety.co.uk 01283 566 333 x5247 Cornwall Alex Pooley alex@ sclerodermasociety.co.uk 01736 755 845 County Durham & Teeside Jessie Pickering 01388 527 840 Derbyshire, S.Yorkshire, Staffordshire & Cheshire Lynette Peters lynette@ sclerodermasociety.co.uk 07947 350 815
Exeter Mike Corbett mikec @sclerodermasociety.co.uk 07918178613 Hampshire Tracey James tracey@ sclerodermasociety.co.uk 02392 677 476 Ireland Michelle McGill michelle@irishraynauds.com 08183 63 999
Diana Twigg diana@ sclerodermasociety.co.uk 01298 24 539
Lancashire & North West Yorkshire Sheila Procter sheila@ sclerodermasociety.co.uk 01282 42 9004
East Anglia Jacky March jacky@ sclerodermasociety.co.uk 01394 286 637
Merseyside Helen Lingwood helen@ sclerodermasociety.co.uk 01512 801 194
East Midlands Cheryl Darch cheryl@ sclerodermasociety.co.uk 01162 717 180
Newcastle and Northumberland Lindsay Wilkinson lindsay@ sclerodermasociety.co.uk 07880 238 213
Plymouth Anne Sheere anne@ sclerodermasociety.co.uk 01752 338 156 Powys & Shropshire Jennifer Ames jennifer@ sclerodermasociety.co.uk 01544 267 988 Scotland Frances Bain frances@ sclerodermasociety.co.uk 0131 477 1122
02920 625 056 Surrey Nicky O'Shea nicky@ sclerodermasociety.co.uk 01483 764 524 West Midlands Jane Beach jane@ sclerodermasociety.co.uk 01527 459 552 West Sussex Lesley Dodd lesley@ sclerodermasociety.co.uk 01903 753 971 West Sussex Jo Frowde jo@ sclerodermasociety.co.uk 01403 741 445 Wiltshire & North Hampshire Lynn Morton lynn@ sclerodermasociety.co.uk 01980 863 444
Somerset & Gloucestershire Judith Foster judith@ sclerodermasociety.co.uk 07985 335 336 South London Celia Bhinda celia@ sclerodermasociety.co.uk 020 8698 6294 South Wales Belinda Thompson belinda@ sclerodermasociety.co.uk
Join us on Health Unlocked HealthUnlocked is a social network for health. By finding others with similar health backgrounds you can take on day to day health concerns together. www.healthunlocked.com/ sclerodermasociety
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Scleroderma News: Local Support
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Contacts Connecting you to scleroderma professionals, groups and nation-wide support networks Susie Hoare susie@ sclerodermasociety.co.uk Helena Rozga Helena@ sclerodermasociety.co.uk Office & Administration Manager: Jennifer Malone 020 7000 1925, jennifermalone@ sclerodermasociety.co.uk Helpline Manager: Helena Rozga, Helena@ sclerodermasociety.co.uk Fundraising/volunteer enquiries: Amy Baker, fundraising@ sclerodermasociety.co.uk 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—19:00 every day. Call 0800 311 2756. Carer Support Contact: Michael Thorpe, 01702 344 925, MTDAAC@live.co.uk
Specialist Nurses
Nurse led lines for general inquiries only, in non emergencies. If the nurse is unavailable please leave a message: Bath Royal National Hospital for Rheumatic Diseases: Sue Brown 01225 428 823 Belfast Ulster Hospital: Audrey Hamilton 02890 561 310 Dundee Ninewells Hospital: Steve McSwiggan 01382 383 233 Leeds Chapel Allerton Hospital: Elizabeth Tyas 01133 923 035 Liverpool Aintree University Hospital: Jan Lamb 01515 255 980 bleep 2231 London Royal Free Hospital Scleroderma queries: 020 783 02326 and Pulmonary hypertension: 020 7472 6354
Newcastle Freeman Hospital Scleroderma queries: Karen Walker 01912 231 503 and Pulmonary hypertension: Rachael Crackett / Julia De Soyza 01912 137 418 Portsmouth Queen Alexandra Hospital: Paula White / Julie Ingold 02392 286 935
To find more specialists in your area visit the website or contact the office.
Scleroderma News Write to:
The Scleroderma Society Bride House, 18-20 Bride Lane, London EC4Y 8EE
Phone us: 020 7000 1925 Email the editor: info@scleroderma society.co.uk Proof Reading: Rosemary Goodwin Roger Sinclair–Clarke Printing & Publishing: Jarvis & Company
London Royal Brompton Hospital Respiratory queries: Lucy Pigram 020 7352 8121 Manchester Hope Hospital: Liz Wragg and Catherine Lambe 01612 060 192
Help us become more environmentally friendly by receiving your next newsletter as an email. Email info@sclerodermasociety.co.uk to chose this option. Don’t forget to recycle this newsletter once you’re finished: share with a friend or pop in the recycle bin. Scleroderma News: Contacts
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