Scleroderma
News
August Issue 2015
The Scleroderma Society is a registered charity: 286736 sclerodermauk.org
In this Issue in this issue of Scleroderma News...
Pg. 2. Welcome Pg. 3 & 4 Society News Pg. 5 & 6. Pregnancy & Men’s Health Pg. 7 & 8 Scleroderma & Children Pg. 9– 12. Orders & Fundraising Pg. 13 & 14 Research & Patient Participation Pg. 15 & 16 Doc Spot & Hello from Belgium Pg. 17 Local Support Group News, Coffee Break & Get Involved 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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Welcome to Our August Edition Hello again, doesn't time fly? When I last spoke to you all through this newsletter my theme was “change”. This time I think the theme ought to be “looking forward”, to both our future as a charity and to research into treatments. Currently times are really exciting as we work together with the RSA in forging the future for a merged organisation, where together we will have a larger voice to better support people with scleroderma and Raynaud’s. We have recruited a CEO for SRUK (Scleroderma & Raynaud’s UK) and welcomed Sue Farrington to head the new organisation on 2nd July. Sue has an excellent track record in the charity sector and introduces herself in this newsletter. I am also pleased that we had the assistance of Professor Dame Carol Black and Professor Ariane Herrick in the recruitment process and thank them for giving their precious time. In June we held our first joint conference with the RSA and it was good to see so many of you at the Manchester venue. The medical teams and scientists equally “looked forward” with some confidence, to new and emerging treatments that target symptoms of scleroderma, as well as acknowledging the vital contributions from our charities. The Scleroderma Society also held its 33rd AGM before the conference where we discussed our trustee report and financials, together with our strategic priorities for 2015 & 2016 and indeed strong support for the merger. Materials for the conference and AGM are available on our website.. Once again if you have any ideas to help us shape the future together please contact us as we would be pleased to hear your views. Finally a big thank you to the RSA and Scleroderma Society teams who worked hard to deliver a very successful event in Manchester. That's all from me. I hope you enjoy reading this edition of the newsletter.
Helena x
Goodbye to Chloe Having worked with the Scleroderma Society for nearly 2 years I am sad to say that I will be leaving this month having been offered a job with the National Institute of Health and Social Care Excellence (NICE). It has been great to work with such an intimate team, to develop my understanding of scleroderma and to work alongside yourselves. Having such an engaged membership is so so important in ensuring that the voice of scleroderma is heard at national level. The wonderful work of the fundraisers, support groups and helpline staff, to name a few, also demonstrate how important you all are to the work of the Society. In the office we are so grateful to have such a dedicated membership and we appreciate your input tremendously. It has been brilliant to work with such a motivated group of individuals and it is your passion that has helped me identify the next steps in my career, so thank you. I look forward to the RSA and Scleroderma Society becoming Scleroderma and Raynaud’s UK and will remain engaged in its developments. With one national voice and all your input we can do great things for people with scleroderma and Raynaud’s.
With Best Wishes, Chloe x Scleroderma News: Welcome
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Scleroderma & Raynaud’s Unveiled Joint Annual Conference 2015 Manchester, 20th June This year, to mark the “Break-out sessions future of the RSA and the were excellent” Scleroderma Society becoming one charity, we breathing joined forces to hold our exercises, and Nurses first ever joint annual Paula White and Julie conference. Ingall explained care plans. The final part of We were delighted to see the day looked in to Martin Birchill, supporter of the year Nicola Whitehill, volunteer of the year so many of you there. t r e a t m e n t o p t i o n s , Between the two charities there were 100 members and research and emerging therapies. Speakers included Dr diagnosed individuals, health professionals and volunteers. Andrea Murray, Professor Chris Denton and Dr. Francesco The brilliantly diverse array of speakers Del Galdo. The afternoon was full of hope. ensured the day was exceedingly If you would like any of the presentations then do get in touch “Enjoyed everything fantastic, informative, informative and engaging. Following or visit our website: sclerodermauk.org/events/2015plain speaking speakers” Professor Ariane Herrick’s welcome, annual-conference Professor Neil McHugh explained what scleroderma and Raynaud’s are; discussing symptoms and treatment options. This was followed by a talk from Dr “As a newly diagnosed individual I have found today to Eileen Baildam who spoke about scleroderma in children and be invaluable in terms of both clinical developments then Dr Elizabeth Renzoni’s fascinating talk on the gut and and how others are coping with the condition.” lungs in scleroderma. To keep the day interactive we also held informal breakout sessions which consisted of smaller groups, allowing members to ask lots of questions. Dr John Pauling discussed skin and ulcers, Dr Iain Armstrong and Prof. Janelle Yorke spoke about pulmonary hypertension and successfully encouraged all to join in in some Rosemary Goodwin, volunteer of the year
Following the conference a number of attendees joined us for a celebratory dinner. The dinner provided us with the opportunity to thank all members and supporters for their involvement to the charities. Prizes were awarded to a number of supporters who have shown outstanding support, dedication and commitment. We are truly thankful for all your hard work and involvement. We are already looking forward to next year’s conference with plans beginning in September. If you have suggestions that you would like to feed-in then do get “I really enjoyed learn- in touch! ing about my mum’s disease and how it affects her daily life.”
Alex Marler, art competition winner
Art Competition..
Thank you to everyone who took part in this year’s Alan Brain, scleroderma sufferer, artist and judge, said he found the artwork so touching, it is “genuine, heart felt and personal. All the ingredients for great art and I feel privileged to view them”. Alan awarded Alex in first place. He said “it captures revelation. It also holds a vision of hope even defiance and pride. I know from personal experiences as many of us do, how difficult it can be to... Alex—”My artwork for ‘unveiling scleroderma’ is an image of a person who has scleroderma like myself. They are taking off the veil and revealing that underneath we are all normal human beings trying to find ways to manage life with this disease. We are vulnerable but brave and looking forward to the future. The future is where we will find answers, solutions, new treatments and support.” Scleroderma News: Annual Conference
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World Scleroderma Day 2015 ‘Unveiling Scleroderma’ 29th June Throughout June we celebrated World Scleroderma Day 2015 (WSD). This year we were honoured to lead the European Campaign for WSD on behalf of FESCA. 2015 saw the launch of a dedicated WSD website which united scleroderma organisations worldwide. It advertised events taking place in Canada, Australia and New Zealand as well as across Europe. To find out more about what happened Key points discussed included: 1. Why early diagnosis is vital across the globe then head to: worldsclerodermaday.org 2. The need for investment in research A global video campaign took place featuring people with 3. Why equity of care across Europe is crucial scleroderma or those with a close association to the condition. Individuals shared their experiences in a 25 second The event was a great success with over 70 attendees joining video. 25 seconds was chosen as 2.5. million individuals are discussions including representatives from pharmaceutical companies, policy makers and MEPs. diagnosed with scleroderma worldwide. Connor was one individual who took part in the campaign and during his video shared his experience, “scleroderma has allowed me to meet some amazing people across the country. I wouldn’t be who I was today without scleroderma.”
Since returning, we have been informed that Douglas Carswell has submitted a question to the House of Commons to discuss ‘what provisions the government has in place for the treatment of people with scleroderma’.
Thank you to everyone who shared their personal experience We have also been working with a range of MPs, engaging in discussions around diagnosis times. This has evolved from our of scleroderma during this campaign. survey ‘Your Diagnosis’ in which we identified 23% of As part of WSD2015 we were invited to present at European respondents waited 2-3 years to receive a diagnosis and 27% Parliament on the changes that need to take place to ensure waited over 4 years. every individual diagnosed has access to quality treatment and By working with MPs and stakeholders we hope we will be care. able to discuss new innovative ways to ensure diagnosis takes place within the first 2 years - the most critical time. WSD was a great success in raising awareness and engaging with a new audience. Thank you to everyone who took part.
… and the winner is... art competition entitled “Scleroderma Unveiled” ...admit to having scleroderma, it’s like walking down the street naked, the painting says that too.”
Pauline Franks, art competition runner-up
Pauline was awarded second place. Alan said “the painting tells a story of hope, love and the beauty of life tinged with sadness. A beautiful, touching painting clearly from the heart. A painting to treasure forever.” Pauline—”Unveiling scleroderma brought to mind my husbands very positive attitude to scleroderma and Raynaud’s. He draws back the curtains and gets out into the world. He is always cold so I put snowdrops which symbolise hope. The stony path shows a difficult journey and willow trees for sadness. Over the mountains a dawn sun brings warmth.” Scleroderma News: World Scleroderma Day
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The majority of women with scleroderma will have normal fertility. Young women with scleroderma may have a higher risk of infertility than older women who have had previous children. It is vital to use effective contraception and talk to your doctor before trying to become pregnant. “I did not have any problems getting pregnant and my 2 children have no health problems.”
eating, and eating slowly. Drugs such as ranitidine or omeprazole are safe in pregnancy. They may be prescribed to reduce the amount of acid in the stomach.
“I did not have any Raynaud's attacks during my pregnancy. My baby was born in December and I do not remember wearing gloves at the end of my pregnancy.”
On the positive side, if you suffer with Raynaud’s phenomenon as part of your disease, your symptoms may lessen, or temporarily disappear because pregnancy increases your inner What are the risks with pregnancy and scleroderma? body temperature and increases the amount of blood resulting There are some extra risks with pregnancy particularly if you in more warm blood going to fingers and toes. have the systemic form of scleroderma. Until recently the traditional advice was for all women with scleroderma was to avoid pregnancy. Recently it has been shown that 70-80% of Will my baby be affected? women will have a successful outcome of pregnancy. Most babies are unaffected by the mother’s diagnosis of scleroderma. A few women with scleroderma have specific If you have the localised form of scleroderma, or well- autoantibodies called Anti-Ro, Anti-La or antiphospholipid controlled stable systemic sclerosis and do not have any heart, antibodies. If you have Anti-Ro or Anti-La antibodies, these lung or kidney complications it is likely that your pregnancy can cross over the placenta and into the baby’s blood will be relatively straightforward. circulation where they can occasionally cause inflammation of the baby’s heart. This is called “heart block” and can interfere Possible increased risks for women with systemic include: with the electrical impulses that keep the heart beating regularly. A special test called a fetal echocardiogram might be Miscarriage (small increase) required during pregnancy to assess the baby’s heart. If you Premature birth and/or small baby Pre-eclampsia (high blood pressure with protein in the have antiphospholipid antibodies this can sometimes increase urine) particularly if you have high blood pressure and/ the risks of pre-eclampsia, a small baby and pregnancy loss – your doctor will discuss these risks in more detail with you. If or kidney disease before becoming pregnant you have any of these antibodies you should be offered Kidney failure regular scans to check on your baby’s growth Difficulty placing drips/taking blood due to skin and wellbeing. thickening or blood vessel involvement
Difficulty with general anaesthetic if required due to limited mouth opening
“The telangiectasia in my nail cuticles disappeared until several months after the pregnancy. My rheumatologist concluded that the pregnancy had suspended scleroderma.”
Will my scleroderma get worse in pregnancy? The majority of women will probably not experience any deterioration. Some women may experience skin thickening. If you have recent onset disease or kidney involvement there is an increased risk of deterioration in pregnancy and you will be monitored carefully for any signs of this. Heartburn is extremely common in pregnancy and women with scleroderma may suffer more from this. You doctor or midwife can give you advice on managing this, for example posture, sitting upright after Scleroderma News: Pregnancy
“I breast fed for 10 months and the number of Raynaud's attacks I had during this time was drastically less than 'normal.”
Can I breastfeed? Breast-feeding is usually encouraged and most medication used for scleroderma is safe to take during breastfeeding. Speak to your doctor about this. In the period after birth, known as the puerperium, the body rapidly returns to the non-pregnancy state and a Raynaud’s attack is possible. Raynaud’s symptoms can occur on the nipple, which are not only painful but also likely to be mistaken for other breastfeeding complications such as thrush or cracked nipples. It is strongly advised that you talk to your doctor about your particular circumstances. Women have often had pregnancies before their scleroderma developed. It is important to be aware that pregnancy can be more complicated if you have scleroderma and you may need more medical involvement than in previous pregnancies. Thank you to our members who shared their pregnancy stories. Do please get in touch to share yours. Page 5
Sexual health is a difficult subject to raise with anyone, despite the fact that it can severely affect your quality of life. The most common sexual problem for men is the inability to get and maintain an erection. This is commonly known as erectile dysfunction or impotence,. Erectile dysfunction may occur due to a number of medical conditions such as, diabetes or hypertension, surgery to the pelvis, trauma, hormone and psychological problems. Other factors include age, alcohol, smoking and medications. Problems and Causes Physical Causes For an erection to happen, nerve impulses travel from brain to the penis. This causes the erectile muscles to relax which leads to an increased blood flow into the penis and surrounding tissues. As the penis fills with blood the erection takes place, which also prevents blood flow out of the penis in order to maintain an erection. In scleroderma it has been reported that the scarring and hardening of the skin and tissues as a result of scleroderma can decrease the blood flow, meaning they do not fill with blood properly. In some cases nerve damage can happen. This causes signals from the brain to be disrupted preventing the erection from occurring. Additionally, a hormone imbalance can reduce desire or interest in sexual activity. Psychological Causes Being diagnosed with scleroderma can cause anxiety. When a man is having problems getting an erection or sustaining it for whatever reason, it is common to feel under pressure. Depression, anxiety, stress, guilt, embarrassment and other reasons can also lead to decreased stimulation. This can lead to feeling disappointment and a sense of loss of manhood. Treatments It is important to seek help. Speaking with your partner can go a long way in reducing
problems such as anxiety. It is important to note that not all treatments are suitable for everyone and some can have side effects. A referral to a GP or urologist for a full assessment is vital to meet your needs. Lifestyle changes, such as cutting down on alcohol, stopping smoking, reducing stress, exercising regularly and losing weight if overweight can help in solving some common problems. An examination will help determine if there are any abnormalities: blood pressure can be measured to assess hypertension, and testosterone, glucose and cholesterol levels can be measured with a blood test. Sometimes, psychosexual treatment may be used to help you better understand and overcome the causes of the problem. These types of treatment encourage couples to undertake exercises at home to encourage intimacy. Some medical treatments currently available for erectile dysfunction include oral tablets, such as sildenafil (Viagra), tadalafil (Cialis) or Levitra. These work by using the body’s natural mechanism to control an erection. If the tablets do not work then there is also the option of vacuum devices. These enhance blood flow. A vacuum draws blood in to the shaft of the penis and causes it to swell and become erect. Once erect a band is placed over the penile base to prevent blood leaving the penis. An alternative treatment could be alprostadil or caverject injections. These help to open up the blood vessels so that blood can flow to the penis. There are alternatives that can be administered as a cream or gel, or suppository (via the rectum). These have been reported to produce very good results. The last resort treatment is a penile prosthesis or implant. It involves an operation where an implant is surgically inserted into the penis. The implant maybe bendable or inflatable. This procedure has been reported to have a high success rate in combating sexual dysfunction. It is important to remember that this a surgical intervention. Careful consideration should be given to the advantages and disadvantages of this procedure.
Share your story We are updating our publication on sexual health for both men and women. We would like to share some stories from men. Do please email: info@sclerodermasociety.co.uk. All quotes can remain anonymous. Sharing your story helps other know they’re not alone. Thank you to those who have already been in touch to share their story.
Centre for Appearance Research
Researchers at the are conducting a study looking at the experiences of intimate relationships amongst people who have altered appearance or a condition that affects how they look. They would also like to speak to their partners. This is on a one-to-one basis and can be in person or over the phone. If you are aged 18 or over, either you or a partner has an altered appearance and you would be willing to discuss your experiences then more information can be found by following this link: http://bit.ly/1L3KGZq (where you can register your interest) or by contacting the researcher, Nick, on: 0117 328 1891 or nick.sharratt@uwe.ac.uk Scleroderma News: Men's Health
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Childhood s Doctors divide childhood scleroderma into two forms with very different features: localised and systemic. The first thing you must understand is which form of scleroderma your child has. You should consult with your doctor or specialist to identify which type your child has. involve the whole side of the face and in some cases the Localised About 90% of children with scleroderma have localised tongue. When one side of the face is involved this can present (affecting only the skin). Localised scleroderma can include the additional difficulties because the facial bones may not grow properly. following groups: 1. Morphea This the most common form of scleroderma in children. It appears in irregular patches that start out small and pink. They eventually harden and lead to a scleroderma diagnosis. Children with morphea have an excellent scleroderma outlook. Often these patches will soften and fade leaving no serious long-term consequences.
How is localised scleroderma diagnosed? The appearance of hard skin is the fist sign. Often there is a red or purplish rim to the patch in morphoea in the early stages, which reflects skin inflammation. In children with lighter skin, the skin becomes brown and then white. In children with darker skin, this can look like a bruise which turns white. This is often the first identifiable symptom. Diagnosis is made with a skin biopsy and a test to measure the heat from the skin is often used, a thermography. An inflamed patch will be hotter than the surrounding area. An MRI can be helpful to see if the fat and muscle under the abnormal skin are affected. This is particularly useful for en coup de sabre, where sometimes there is inflammation of the eyes, tissue behind the eye and in the brain itself.
2. Linear Instead of a round patch of skin there may be involvement that appears to spread out in lines. This often appears on the arm or leg and extends to the hands or feet. Linear often causes minimal problems and can be treated. When large and crosses over a joint, such as the wrist, permanent damage can occur because the joints ability to grow and development is affected. A more aggressive treatment for this may be necessary. What is the treatment for localised scleroderma? Children with linear scleroderma often have a good outlook Treatment is aimed at reducing inflammation. This treatment will however have very little effect on the fibrous/scar tissue. If providing they receive appropriate treatment. inflammation is prevented, then the body is able to break 3. Linear scleroderma en coup de sabre down some of the excess fibrous tissue softening the skin. This is when children have linear scleroderma, which impacts their face and/or scalp. If the lesions are confined to the scalp For morphea, a judgement by the doctor as to how inflamed it is and whether the underlying tissues are affected will and forehead then the effect is largely cosmetic. determine treatment. Medications vary from no treatment, to 4. Parry Romberg syndrome the use of steroids and methotrexate. The condition often This type of scleroderma has similar skin lesions, but may resolves over a period of a few months to a year but can
Everyone has a story and here is mine... I’m blessed with three beautiful daughters, Kayleigh (12), Kaitlyn (10) and Kiara (7). My middle daughter Kaitlyn was diagnosed April 2009 with Linear Scleroderma en Coup de Sabre and Parry Romberg Syndrome, when she was 5 years old. What!? Was my first reaction, it came as a huge shock, when a dermatologist diagnosed her. The thought of our little princess losing her face was unreal!! It started when she was two years old. I noticed a blue line running down her forehead and everyone always said it’s my imagination. Kaitlyn has been in and out of hospital from 5 months of age, always with high fever and a nasty chest. She went for her first CT scan and MRI in May 2009, reporting Vasculitis and once again confirming Linear Scleroderma. It was quite difficult finding the right doctor, in the beginning of the illness. It was a long journey for us from the one doctor to the other, with the same explanation: The illness is very rare in South Africa. We had to battle with our Health Care Fund (Discovery Medical Aid), as they were refusing to pay for her medication as her illness was not listed. Kaitlyn
Scleroderma News: Childhood
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scleroderma reoccur. Use of steroid creams can be helpful in some cases. treatment. Plaque morphoea may leave cosmetic skin defects which can What are the symptoms of systemic sclerosis? be treated with skin camouflage. The early signs are changes in colour of the fingers and toes For linear, more aggressive treatment is necessary as fat, due to (Raynaud’s phenomenon), along with chilblains and muscle and bones are involved. If untreated, the bones can fingertip ulcerations. The skin of the finger tips and toes often stop growing. This can cause shortening of arms and legs or a are the first to harden and become shiny, so is the skin over small hand for example. There may also be a loss of fat and the nose. The hard skin then spreads and can possibly affect all muscle under the tight skin. The thick skin over a joint can the body. Swollen fingers and sore joints can occur in the cause stiffness and deformity of the joint. Thermography beginning. usually shows inflammation and can be a tool to assess the state of the inflammation during and after treatment. Anti- How is systemic sclerosis diagnosed? inflammatory treatment consists of steroids and Diagnosis is by skin biopsy. It is important that all the internal methotrexate. Steroids may be given as intravenous infusions organs are assessed for disease with blood tests and other in the beginning. Physiotherapy is extremely important in types of tests on the function of each organ. The child should linear scleroderma. It is important to keep the joint moving be referred at the earliest opportunity to a paediatric with stretches and deep connective tissue massage. In cases rheumatologist. where a leg is affected, unequal leg lengths can occur which What is the treatment of systemic sclerosis? can put extra strain on the back, hips and knees. A shoe raise This varies depending on which organ is affected. For the skin, will improve all these effects. methotrexate has been proved to be beneficial. Where there Morphea cannot tan, therefor it is important to protect the are swollen joints and raised inflammation markers on blood tests, then steroids are also used. For Raynaud’s, keeping skin from the sun at all times using sunblock. warm is key to prevent the skin from breaking. Sometimes medication to dilate the blood vessels are needed.
Systemic Where there is lung or kidney involvement, cyclophosphamide Only about 10% or less of children with scleroderma have is often used. The decision as to which treatment is necessary systemic sclerosis (affecting the skin and internal organs). has to be made by a paediatric rheumatologist with experience of scleroderma, in conjunction with other It can appear in any age. Before puberty it can occur equally in specialists. Physiotherapy may be needed to keep the joints boys and girls. After puberty, it occurs more often in girls. and chest walls moving. In systemic sclerosis, poor circulation (Raynaud’s Similar to the adult form of systemic sclerosis, children with phenomenon) is often also present. Internal organ systemic sclerosis require expert treatment and longinvolvement can lead to symptoms such as difficulty in term follow-up in to adulthood. swallowing and heartburn. Sometimes the heart, lungs or kidneys can be affected which may require specific tests and
Fortunately, I discovered a wonderful Scleroderma group on Facebook, it became my support (I searched day and night on the web, wanting a cure so badly!!). I have learned a lot since. One thing that I can share is to focus all your energy and love on your child, not the illness. Embrace every day. As a mommy, my job is to encourage Kaitlyn to be brave and strong. I won’t always be there to protect her. The illness effects the whole family… one afternoon, Kayleigh started rebelling, acting out, being difficult. Warning lights came on as she is usually so well behaved! We had a heart-to-heart and she said: “Mommy, I love Kaitlyn so much and I don’t like it, when people always ask, what’s wrong with her face”. I hadn’t realised the effect the illness caused until then. As for Kaitlyn, I have encouraged her to be positive - to be a fighter not a victim. It’s not always easy, but she is a little girl with a huge heart and very courageous! She always smiles and loves to dance like there’s no tomorrow. Dancing is her biggest passion. It is her way of expressing her feelings.
Kaitlyn
She has recently been asked to become an Ambassador for HCSMSA (Health Care Social Media South Africa) I’m a very proud Mommy!! With Love, Michelle Scleroderma News: Childhood
PS. Remember to Hope, Dream and Love Page 8
On Sunday 2nd August over 20,000 cyclists lined up in Queen their loved one in the mass of Elizabeth Country Park to take on a 100 mile challenge on the cyclists. closed roads of London and Surrey. At just gone 12pm we were The Prudential Ride London-Surrey 100 follows the route delighted to see Vicki Bale, speed made famous by the London 2012 Olympics and winds passed up the Newlands Corner hill, but some of London’s iconic landmarks and through Surrey’s as Vicki said ‘I live in Shropshire so stunning scenery. this is pretty much flat for me.” Vicki stopped at the top and it Once again we were stationed at Newlands Corner, half way was wonderful to speak with her around the course to watch our cyclist come through. The and thank her in person for taking weather this year was absolutely glorious, after last years wash on this challenge. This is the out I was prepared with a coat and brolly, but thankfully I second year Vicki has cycled the didn’t need it as the sun stayed all day. course and she has raised over £5,000.00 for the Scleroderma The atmosphere at the event was amazing with families, Society in memory of her friends and dogs all coming out to watch the race and spot husband.
2016 applications are now OPEN The Scleroderma Society has 12 Gold Bond (guaranteed) places this year to offer to our wonderful supporters. The Prudential Ride London-Surrey 100 is becoming one of the most prestigious cycling events within the UK. You will join over 20,000 cyclists on the closed London and Surrey roads as you follow a route made famous by the London 2012 Olympics. You can enter as a single rider or a team. You can ride a tandem bike, a road bike or even a Boris bike—this year we saw all of these bikes take part in the race but our hat went off to the man riding a Boris bike, especially as it has no gears. If you are interested in applying for this years event then please get in touch with Amy Baker to find out more and request an application form. We would love to fill all of our places next year so please pass your newsletter on to someone who may be interested: 020 7000 1925, amybaker@sclerodermasociety.co.uk Places will be allocated at the end of February—6 months before the race—so get your application in to secure your place.
On the 27th June, Derek Avery joined 25 cyclists to Society. embark on a epic journey from Lands End to John O’Groats. On finishing this mighty challenge Derek decided to cycle 1000 miles and fundraise for Derek said, “I did the Scleroderma Society due to a close friend being 1,000 miles in 14 diagnosed with the condition. days and will never forget it. It is my He climbed over 66,000ft along his journey and pleasure to help you battled the British weather as he made his way as one of my close through England, Wales and up the spine of friends has this Scotland. disease.” Derek completed his journey in 14 days and has raised almost £2,000.00 for the Scleroderma Scleroderma News: Fundraisers
Derek at the start of his adventure Page 9
We decided to fundraise through a knew we needed to do something big to skydive for the Scleroderma Society raise as much as we could, and what because it's a disease that I suffer from. better way than my dad jumping out of an aeroplane!? I've had Scleroderma for nearly 8 years now and it's progressed quickly. We had We set up a Just Giving page which I never heard of the disease before my advertised on my Facebook page called diagnosis and so we did our research - all 'Me, Myself & My Scleroderma' where I of it was bad news - until we found the currently have 300 followers. I also Scleroderma Society and scleroderma contacted the local papers who did a warriors! I have met some wonderful story on the Skydive. We sent in photos fighters over the last eight years and it and our Just Giving page, along with our has given both myself and my family reason for fundraising and the donations some hope that one day there will be a came flooding in. cure. What amazed us most was the generous We are aware that research needs donations from the family members of funding and so my dad (Paul) decided to scleroderma fighters - these were people do a skydive to try and raise as much I had never met, who wanted to give money and awareness as possible to their money to our charity. We were donate to the Scleroderma Society. We overwhelmed with generosity and we can't thank everyone enough. We really appreciate every single penny. After the skydive the paper did a follow up story, letting those donators see how the day went and how much we had raised so far.
Paul gliding down to Earth
my followers up to date every week on my Facebook page until the skydive). Written by Ashton—Paul’s Daughter Paul, Aston’s father said, “the skydive was one of the best experiences of my life. Noisy, but amazing! It felt great to know I was raising so much money for such a wonderful cause. My daughter suffers badly with this disease and we all hope for a cure. This skydive is one step closer to finding that cure! One word to sum up the skydive - WORTHWHILE!"
Our top tip for raising money is shouting it from the rooftop! Let everyone know what you're doing and why you're doing it. Contact whoever you can. Anyone that can help spread the word! Make a Just Giving page so people can donate anonymously if they want to, and pay by card online. Also, if you can, try and keep people updated on how much you've raised running up to the event. (I kept Paul and Ashton proudly wearing their t-shirts
Take on your very own challenge If Paul and Ashton’s story has inspired you to take on a challenge for We not only offer Charity Skydives but we have a range of events the Scleroderma Society, why not book yourself (and a couple of taking place throughout the year. Our challenges give you the friends) onto our Charity Skydive. opportunity to do something you have always wanted to whilst raising vital funds for the Scleroderma Society. Our skydive takes places throughout the year at a range of locations, all you need to do is pick a location and date that suits you. If you could take on your ultimate challenge what would you be doing? We will offer you support and advice throughout your challenge Jumping out of a plane at 10,000 feet? helping you to reach your minimum sponsorship target of £395.00 Trekking along the Great Wall of China? (£495.00 Scotland and Northern Ireland) meaning that you can JUMP Hiking up to the summit to look down on Machu Picchu? for FREE! Whatever your ultimate challenge we can help you achieve it. If you would like more information about our skydive then call Amy Contact Amy Baker on 020 7000 1925, or visit Baker on 020 7000 1925, or visit sclerodermauk.org/join-an-event sclerodermauk.org/join-an-event Scleroderma News: Fundraisers
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Christmas Trees (Pack of 10 cards) 14cm x 14cm , £4.99 per pack
Christmas Robins (Pack of 10 cards) 18.5cm x 8.4cm, £4.99 per pack
Order your Christmas Cards and Sunflower Pins over the phone. Call 020 7000 1925 To place an order please have your credit or debit card to hand. Placing an order over the phone helps keeps our administration costs down meaning more of your donation can go on supporting people with scleroderma and funding research.
We Three Kings (Pack of 10 cards) 14cm x 14cm , £4.99 per pack
All of our Christmas Cards come packaged in packs of 10 cards with envelopes. This year all of our cards also feature the Charity so you can show your support for the Scleroderma Society this Christmas:
To place your order by post please complete the form below, cut out and send along with a cheque made payable to The Scleroderma Society Postal address: Scleroderma Society, Bride House, 18-20 Bride Lane, London, EC4Y 8EE Selection
Number Required
Sunflower Pin (£1.99)
Sunflower Pins
10 x Christmas Trees (£4.99)
We are delighted to announce the launch of our new bespoke sunflower pins. These pins are larger than our original pins and have a wonderful metal detailing.
10 x Christmas Robins (£4.99) 10 x We Three Kings (£4.99) (P&P is included )
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Scleroderma News: Orders
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Inside of Christmas Cards
If you would like to support the Scleroderma Society this year by ordering our Christmas Cards, then please either order over the phone or using the order form to the left.
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If you are looking for a beautiful stocking filler for friends and family then look no further. You can show your support for the Scleroderma Society everyday with our attractive sunflower pin. If you are interested in ordering then you can view all of our products online by visiting: sclerodermauk.org and clicking ‘Our Products’ in the top right hand corner. All money received through the sale of our items contribute to the work of the charity, providing support and funding research. Page 11
If you’re worried about a symptom, want to know where to It has been wonderful that so many of you have decided to get help, or want some hints or tips then call our free helpline renew your membership and donate to the Charity by phone. (free from UK landlines) to speak with one of our volunteers. By calling us to donate or renew your membership you are The Society is a member of the Helpline Partnership and helping us cut our administration costs, meaning more money conform to standards of excellence in how we operate. With can go to supporting people with scleroderma and funding all our volunteers having regular training. research. The helpline is open 9am to 7pm all year round!
0800 311 2756 A big THANK YOU to Liz We would like to take this opportunity to thank and say good bye to Liz Holloway (centre) who has worked on our helpline for 12 years! We are so grateful for all she has done for the Society and wish her all the best.
If you have not yet tried donating via the phone I would encourage you to do so. It is quick and simple, all you need is your credit/debit card to hand and we can process your donation in a couple of minutes. To donate via the phone call our friendly team on:
The Scleroderma Society is honoured to be one of three charities who benefit from the Belper Games. Last year the Belper Games donated ÂŁ3,500.00 to the Scleroderma Society, a huge sum of money, which makes a considerable difference to the lives of people with scleroderma. Each year we travel to Belper, Derby, to support the games and speak to participants and those enjoying the day about the Scleroderma Society and how the Belper Games supports us. Nick Wheeler and the Belper Games committee have been making the event bigger each year and this year was the biggest event yet. The event began on Friday night with live music and local ales. On Saturday the games began with 12 teams turning up to take on the inflatable obstacle course. The weather this year was absolutely perfect and pulled all of the local residents down to the event to enjoy the food stalls, ice-cream, live performances and new this year, the dog show. Once again we had a fantastic day and the committee are hopeful that this year will see the biggest income from the due to scleroderma. Funds are donated to the Scleroderma event. Society. The Belper Games is a wonderful event held every year to remember Penny Wheeler, who unfortunately passed away Thank you Nick and the Belper Games Committee. Scleroderma News: Donate
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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 a million pounds into scleroderma research. Below is an update on some of the research projects that we have funded. The scarring process PhD project—studying the scarring process which leads to tissue fibrosis in scleroderma By Dr David Abrahams and colleagues. University College London Background: Scleroderma is characterised by early damage to the blood vessels, which is followed by widespread and often persistent inflammation. This stimulates an exaggerated healing process leading to tissue remodelling and the generation and deposition of excessive scar tissue in affected area. Excessive scarring, also known as fibrosis, is widely believed to be one of the most severe and lethal complications of scleroderma. It can occur in the skin, kidney, heart and lungs. Where the deposition of scar tissue progressively damages the normal tissues the organs can be compromised and function impaired. For instance, in the lung, fibrosis results in the deposition of dense and stiff scar tissue surrounding the air sacs. This prevents normal lung function and efficient air exchange. Scarring can also occur around blood vessels during a process called vascular remodelling or perivascular fibrosis. Here, the fibrotic process causes thickening of the blood vessel walls and surrounding adventitial tissue. This reduces the diameter of the vessel lumen causing occlusion, altered blood flow and increased blood pressure. Fibrosis is often regarded as an abnormal wound healing response. Inflammation leads to a recruitment and activation of local resident of fibroblasts and the transition of these cells into their contractile counter-parts called myofibroblasts. In lung and skin fibrosis the myofibroblast that is believed to be the main cell responsible for producing and depositing the scar tissue. In addition, these cells use their contractile properties to pull the scar tissue together to repair the wound. In normal wound healing the myofibroblasts are removed and the scar tissue is gradually reorganised and largely disappears leaving the repaired tissue with almost normal structure and function. In scleroderma, myofibroblasts survive and the prolonged inflammation promotes and amplifies the scarring process. This progresses into extensive and pathological fibrosis. As the fibrosis develops proteins deposited within the scar tissue (called the extracellular matrix) are cross-linked and the scar becomes condensed and stiff. As the myofibroblasts interact with the extracellular matrix, the altered biomechanical properties of the extracellular matrix directly influence the survival and activation of the myofibroblasts. In this way, the abnormal and excessive scar tissue plays an active part in causing continuous scar Scleroderma News: Research
formation perpetuating fibrosis in scleroderma. The project: A key area of research lies in increasing our understanding of the scarring process in scleroderma and in particular the composition of the scar tissue and how the components within the scar tissue are cross-linked. The Scleroderma Society PhD project will use sophisticated techniques to study the composition of scar tissue in scleroderma and to determine how the scar proteins are organised and cross-linked within the fibrotic lesions. The study will also identify the key proteins that underlie the cross-linking process and determine the impact of inhibiting this process on the level of scar formation by scleroderma myofibroblasts. By determining the patterns that distinguish normal from disease scar tissue the project will help to identify the mechanisms that underlie the progression of fibrosis in scleroderma. These studies will also determine the impact of scar tissue on myofibroblast function, and whether by blocking cross-linking the progressive scar formation can be attenuated. In the long-term these studies will highlight the potential to modulate the scarring process in scleroderma with new therapeutic targets. It may also open a way for established fibrosis to be reduced, resolved or even reversed. The Scleroderma Society will be funding this PhD project for 3 years. We look forward to updating you on its progress. Pulmonary Arterial Hypertension Vascular Disease in Scleroderma: Key pathways in pulmonary arterial hypertension By Dr Markella Ponticos. London, Medical School
University
College
Background: Pulmonary arterial hypertension is a life threatening complication of scleroderma (SSc-PAH). SScPAH is characterised by thickening of the walls of blood vessels in the lungs which lead to narrowing of the lumen. This forces the heart to pump harder in order to maintain blood flow through the lungs, which results in increased blood pressure in the lungs. The research investigating SSc-PAH has focused on studying the main cell type which resides in the vessel wall, the vascular smooth muscle cell (SMC). We believe two major changes occur in SMC in SSc-PAH. The SMCs change their characteristics and begin to grow and multiply and they also synthesize and deposit scar tissue in the vessel wall. These changes give rise to the narrowing of the lumen and are the main cause of the SSc-PAH. Page 13
The project: Our research has focussed on the production of scar tissue by SMCs by studying how scar tissue is formed as well as what regulates the production of scar tissue which contains high levels of collagen. The results: We have discovered in SMCs there is a unique process by which they produce scar tissue. We have identified a specific protein called NKX2-5 which directly controls the production of collagen type I (the main component of scar tissue) in blood vessels. We were also able to show that this protein is ‘switched-on’ in SMC as they increase their proliferation and secrete more collagen. Perhaps more importantly, our on-going studies pointed to a more critical role of NKX2-5 in SSc-PAH. When we inhibited the influence
of NKX2-5, we noted that the cells did not proliferate or produce scar tissue. These experiments lead us to propose that NKX2-5 is closely linked with the development of SScPAH, it is a key regulator of SMC function and is an important factor in driving the disease process. Next steps: This project complemented and enhanced other studies on PAH carried out in our lab at the Royal Free and has greatly increased our understanding of the molecular and cellular complications in SSc-PAH. On-going analysis and future work of this study will continue to provide new avenues for research into the study of SSc-PAH. We are extremely grateful to the Scleroderma Society for their continuing support in our research.
In June Kim Fligelstone attended the EULAR annual congress in Rome. The congress has become the primary platform for the exchange of scientific and clinical information in Europe. It is also a renowned forum for the interaction between medical doctors, scientists, health professionals and representatives of the pharmaceutical industry worldwide. We are extremely pleased Kim was able to attend and to present the findings of a research project at UCL. Read Kim’s report below. Systemic sclerosis (SSc, often referred to as scleroderma) is a rare connective tissue disease affecting many different organs and systems of the body. Symptoms, disease course and outcome vary enormously between patients. 4th year, (1st clinical) medical students at the Royal Free Hospital, London receive rheumatic disease training over a 6 week period. One of these lectures is on Raynaud’s phenomenon and SSc. Each group consists of an average of 15 students. We were interested if patient participation in the lecture would be beneficial to the better understanding of the diseases by the medical students and will increase interest into these complex conditions. An anonymous questionnaire consisting of 7 items was given to the medical students to fill out after the completion of the lecture. This covered questions regarding the overall content, presentation and quality of the lectures; specific questions regarding the participation of a patient and two “control questions” covering information presented in the lecture, to test if students understood and remembered key messages regarding disease classification and autoantibody associations. Over three consecutive lectures 36 students filled out a questionnaire. Out of the 24 students who had been to a lecture with a patient before, 7 had been to such a lecture just once and 15 had been to more than one, although the majority had been to only 2 lectures with a patient present (2 didn’t specify how many lectures with patient participation they have attended). To the question “Can you see any benefit in having a patient to discuss their experience?” all 36 students answered that it was beneficial to have a patient in a lecture. Students felt that seeing symptoms and signs of the disease helped them to remember the information presented in the lecture. In addition they found it very useful to hear a personal patient perspective on living with scleroderma and coping with the realities of living with a chronic disabling disease. We also asked if the students have any reservations about having a patient present at the lecture. Of the 36, only 9 students expressed concerns. All were related to their reluctance to discuss disease related problems that may either be embarrassing or disturbing for the patient, in particular, mortality and prognosis. After reviewing the first set of questionnaires we made a point of informing the students at the beginning of each lecture that they were talking to an experienced patient who understood and was happy to discuss any aspects of the disease. As a result students were more comfortable to ask questions. Conclusions: Overall patient participation during the lecture was seen as a useful addition to the lecture. Students described benefits such as helping them to remember clinical signs and symptoms, giving them the opportunity to ask questions, gain a perspective of the life experience of someone living with SSc. It is important to stress that the participating patient is experienced in all aspects of the disease including morbidity, mortality and differing prognosis. This should be made clear at the beginning so students feel comfortable discussing all complexities of the disease in the presence of a patient. Acknowledgements: Thanks to Svetlana Nihtyanova who introduced the concept of patient participation and helped with all aspects of this abstract and the medical students who participated. Kim Fligelstone Scleroderma News: Patient Participation
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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 thought if children developed scleroderma it was only localised to skin and tissue issues? My child has problems with reflux and constipation as well as itchy skin and our local hospital is referring us to various specialists to help. Could these symptoms be related? Is it another type of scleroderma? What can we do? The first and most important thing to address is diagnosis and your specialist will help with examination and tests. Scleroderma can be a localised disorder (e.g. morphea) or systemic – that involve blood vessels and internal organs. Although localised forms are the most common type of scleroderma in childhood onset disease, occasionally systemic forms occur and this needs assessment and treatment as in adult systemic sclerosis. Do you know if dementia and scleroderma are related? My dad suffers from scleroderma and his memory has been failing him a lot recently. He had depression last year, but seems to have recovered from this now. The brain is not affected by scleroderma as far as we are aware and so it is unlikely that there is any link directly between scleroderma and the development of dementia. However any chronic medical illness can impact on concentration and mood and this can result in some memory problems. If you have specific concerns then you should discuss these with your father’s doctor as it may be appropriate to organise further assessment. Can a gluten free diet help with Raynaud’s symptoms? Although diet can influence Raynaud’s there is no specific association between a gluten free diet. Antioxidant vitamins and other supplements may benefit Raynaud’s Scleroderma News: Doc Spot
and might be recommended as part of a general treatment approach. Gluten exclusion is important if you have confirmed coeliac disease as it cures the condition but if this is not present then it is unlikely to help. An indirect link is that in coeliac disease weight loss can be a problem and this could worsen Raynaud’s and so treatment of this condition by gluten exclusion would be beneficial. I have CREST and have recently started getting incredibly painful toes at night, which wakes me up. Is this normal? And why? There are many reasons to have pain in the toes in scleroderma. It can relate to altered circulation, arthritis or digital ulcers. CREST is a medical term that describes some patient s with the limited form of systemic sclerosis. It is helpful as a shorthand name that describes some of the key features of the condition – calcinosis (chalky lumps under the skin), Raynaud’s, oesophageal reflux, sclerodactyly (thickened skin on the fingers) and telangiectasia (red spots on the skin – especially hands and face). CREST patients may develop other complications such as lung disease and also not all patients with scleroderma have the features of CREST and so in UK it is a term that is falling out of favour. However, limited scleroderma can cause pain in many ways including ulcers, poor circulation and arthritis. It is important to look for these causes so that they can be treated. Occasionally patients develop pain due to nerve irritation in the feet and legs and this may respond top specific treatments for nerve pain. Finally some patients with Raynaud’s also develop pain and burning discomfort after a Raynaud’s attack that can be especially difficult at night – this condition is termed Erythromelalgia and can occur as a condition in its own right in some cases, without Raynaud’s.
Is it safe to be in the sun if you have scleroderma? In general sun exposure does not worsen scleroderma but nor does scleroderma protect you from the possible adverse effects of sun exposure. Sun screen should always be used. If you have any overlap features of lupus then sun block must be used and sun exposure avoided as it can cause skin and other aspects of lupus to worsen. If there are features of Systemic Lupus Erythromelalgia (SLE) or dermatomyositis then high factor “sun block” must be rigorously applied. Finally, patients with scleroderma often notice darkening of the skin. This is due to activation of the pigment cells in the skin that respond to sunlight. Some patients wish to avoid this effect and so sun exposure should be limited as much as possible. In addition immune suppressive drugs may increase risk of skin cancer and your doctor will advise you about this and any specific precautions required. If I have sever Raynaud’s will I inevitably develop scleroderma? The answer is very definitely no. There have been a number of studies which have been undertaken where people have followed-up the severity of Raynaud’s in terms of frequency of attacks for instance. What does appear to put people at risk are nail fold capillary changes and abnormal antibodies. They will also have abnormal proteins in the blood which can sometimes be present for some years and do seem to predict what is going to happen. The key thing is that the Raynaud’s can be mild or it can be severe even amongst those with severe Raynaud’s in terms of the number of attacks. Only a very small minority will go on to develop scleroderma.
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supporters to which we are very grateful for their generous contributions, particularly through the wonderful array of fundraising activities. These range from dinners and concerts to stalls at flea markets. Our finances are healthy and we the charity see a great future. Our one concern is something different to what you might expect. It is of age. Our decision makers are not getting any younger and we have been unable to recruit. We see other charities appearing with a youthful presence. This is something we need if we are to continue well I do not have scleroderma but have been working with APSB in to the future. since it was founded in 1999. This is on a voluntary basis in addition to my full time job, which is in a bank. For 10 years I Annually, the charity holds its AGM and medical conference, was the secretary of a large umbrella organisation for and every two years we organise ‘Franco-Belge’ days. ‘Franco autoimmune conditions, such as scleroderma and lupus, called -Belge’ consists of 3 educational conferences with French and CLAIR. I also represent APSB at FESCA meetings - I have never Belgian scleroderma health professionals, which includes lots missed a meeting. My passion for improving the lives of of questions and answers followed by a meal and an afternoon people with scleroderma is what keeps me going in my roles. concert. Patients from the north of France also attend which It is so important to me. make the ‘Franco-Belge’ events very popular.
By Guy Dagnies. Secretary for the Belgium Scleroderma Association ‘Association des Patients Sclérodermique de Belgique’ (APSB) (French speaking)
The main goal of APSB is to create a chain of solidarity and hope between patients. We do this by informing and supporting scleroderma patients through close work with medical professionals. Thanks to close collaboration with scleroderma medics, who are also members of our board, we our very hopeful that research will bring great knowledge and recognition of scleroderma. Our board consists of 10 volunteers (7 patients and 3 non-patients) and 4 doctors. The charity consists of approximately 250 people diagnosed with scleroderma. We also have 450 members who are friends, family members, rheumatologists or general This year, for World Scleroderma Day, we organised some stands of information in hospitals. We also had a portable capillaroscope (a useful tool for diagnosing scleroderma) for people to try out to help raise scleroderma awareness. It was an extremely successful day, however, the greatest success for us was being the host country for the scleroderma parliamentary event in Brussels, which thereby allowed us to ensure a high number of patients were able to attend. The sessions were brilliant, engaging and full of hope - the hope that one day we will have the upper hand on scleroderma. This is something I truly believe. Scleroderma News: Hello from Belgium
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Local Support News, Charity Vacancy & Coffee Break A massive congratulations to Helen Nutland who runs the Burton on Trent local support group for winning local support group of the year. The group recently held their 10 year anniversary event and have been supporting both the RSA and Scleroderma Society for a number of years. Both charities and the members are so thankful for all your continued support. Well deserved winners! Helen receiving her award at the dinner
Member and scleroderma suffer, Sidra Chaudry, is looking for members to be involved in her Doctorate study in Counselling Psychology (D.C. Psych.) project titled, ‘experience of living with SSc: a phenomenological enquiry’. The project is being carried out as part of her studies with NSPC Ltd. and Middlesex Word Wheel University. Living with systemic sclerosis is challenging as it affects every aspect of family life. The aims of the study are to explore and understand the impacts of SSc on daily living and to identify any coping mechanisms. The study has ethical approval from the university. Sidra is looking for women, aged between 30-50, medically diagnosed with SSc and in a stable or married relationship to contact her for a face-to-face interview. These will last approximately one hour and be held in a meeting room at the Scleroderma Society HQ, London. To find out more do contact Amy Baker at the Scleroderma Society—020 7000 1925 / amybaker@sclerodermasociety.co.uk
We are recruiting an information and Communication Officer who will hold a central role within the charity, ensuring that all communication is accurate, accessible, impartial, balanced, based on evidence and well-written. This role will monitor the charity’s impact online, report on key trends and develop new initiatives and campaigns to increase traffic. If you are interested or know someone that might be then contact: Amy Baker, 020 7000 1925, amybaker@sclerodermasociety.co.uk or visit our website for the job description and person specification: www.sclerodermauk.org/work-for-us
There are 72 words hidden in the word ‘sclerosis’. How many can you find? Make sure you always use the R.
S
C
L
E
R
O
S
I
S
9 letter word = 1 8 letter words = 1 7 letter words = 9 6 letter words = 15 5 letter words = 24 4 letter words = 22
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
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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
Surrey Nicky O'Shea nicky@ sclerodermasociety.co.uk 01483 764 524
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
West Midlands Jane Beach jane@ sclerodermasociety.co.uk 01527 459 552
Essex, Kent & East London Amanda Thorpe dollydumpling23@gmail.com 01702 344 925
Oxfordshire & Berkshire Melanie Bowen melanie@ sclerodermasociety.co.uk 01865 517 033
West Sussex Lesley Dodd lesley@ sclerodermasociety.co.uk 01903 753 971
Plymouth Anne Sheere anne@ sclerodermasociety.co.uk 01752 338 156
West Sussex Jo Frowde jo@ sclerodermasociety.co.uk 01403 741 445
Powys & Shropshire Jennifer Ames jennifer@ sclerodermasociety.co.uk 01544 267 988
Wiltshire & North Hampshire Lynn Morton lynn@ sclerodermasociety.co.uk 01980 863 444
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 07546 753 878
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 02920 625 056
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: 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 London Royal Brompton Hospital Respiratory queries: Lucy Pigram 020 7352 8121
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. sclerodermauk.org
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 Website sclerodermauk.org Proof Reading: Rosemary Goodwin Roger Sinclair–Clarke Printing & Publishing: Jarvis & Company
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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