Wrap-up warm, winter’s coming
Scleroderma In this edition Our New Trustee Top-Tips For Your Health & Wellbeing
Scleroderma Research
The Scleroderma Society is a registered charity: 286736
News
November Issue 2014
In this Issue A round up of the treats we have in store for you, in this autumn issue of Scleroderma News...
Pg. 2. Welcome from our new Trustee Pg. 3 & 4. Society News—Buy your Christmas Cards Pg. 5 - 8. Top-Tips for your health & wellbeing this winter Pg. 9 - 12. Volunteer and Fundraising News Pg. 13 & 14. Scleroderma Research Pg. 15. Doc Spot Pg. 16. YP Face IT and ‘Hello’ from Australia Pg. 17. Local Support Group News & Competitions
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https://www.facebook.com/sclerodermasocietyuk 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! Welcome to the November issue of Scleroderma News. In this issue we are celebrating change, not only the changing of the seasons as we move through autumn to winter but also lifestyle changes. We have some great hints and tips to make sure your winter is less of a wipe-out and more of a wonderland.
This is not the only change, as your accompanying letter also highlights database changes and a change to membership subscriptions. As a charity we value your membership and so wanted to be open and honest about the reason for this change. If you do have any questions regarding this change please contact the team.
The charity is going through an exciting period of change as we push to achieve Information Standard accreditation, which ensures the charity produces clear, accurate, balanced, evidence-based and up-to-date information. Next year will see a range of new publications, with the first being Oral Health developed in association with the RSA.
The final change that we would like to inform you about, is the appointment of our new trustee, John O’Brien. We are delighted to welcome John to the charity and look forward to the year ahead.
Thank you for your continued support and we hope you are as excited about 2015 as we are.
The Scleroderma Society Team X
New Trustee John O’Brien It’s a huge honour to be the newest trustee on the Scleroderma Society’s Board. My mother, Imelda, suffered from Raynaud’s Disease and Scleroderma for many years, and sadly passed away from complications arising from this in December last year. Imelda spent her career as a nurse here in the UK, before retiring back to Ireland. She was lucky in that she had an excellent medical education and understood the challenges of her illness and how to manage this. When she retired, she participated in some research into Scleroderma and different treatments in Dublin. My mum was a “doer” and not one to sit around, so when she passed away, I wanted to find a way to remember her and to support people with Scleroderma. I walked the Coventry Way in April this year (all 40 miles of it!) and
raised nearly £2,500 for the Society, which was a good start. However, I wanted to get involved on a long term basis and this seemed a perfect way. I have worked in trade associations and charities in the health sector for 11 years at director level, and I am currently the Chief Executive of the Global Law Summit. I look forward to working with my fellow trustees and using my background in business and member engagement to taking forward the Society’s exciting aims and to continually help improve the support we can offer people with Scleroderma.
Note to the Editor: We want to bring you up-to-date with the fantastic achievements of our newsletter editor, Hollie Thorman (left). For the last year, Hollie has been studying hard and has recently achieved a postgraduate degree in post compulsory education, to add to her previous accomplishments of bachelor’s degree in Media and Journalism, and master’s degree in Journalism. We are pleased to tell you that she now has employment as a full time English teacher at Redbridge College, closer to her home. I am sure you will all join us in wishing her well. Hollie will no longer be our editor but will be there to support us with her expertise, in an advisory capacity. We would like to thank Hollie for re-vamping the newsletter, and we know because we have had lots of feedback that her work has been much appreciated by our members and readers.
Best Wishes from all of the Scleroderma Society X
Scleroderma News: Welcome
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Society News Conferences and Events We have been extremely busy over the past couple of months attending a host of conferences to increase awareness of scleroderma among the medical community. British Society for Paediatric and Adolescent Rheumatology The Scleroderma Society was delighted to be offered a free stand at this years British Society for Paediatric and Adolescent Rheumatology conference. This is the first event the charity has attended focusing on juvenile scleroderma and it was extremely beneficial. The charity will focus on juvenile scleroderma during 2015/16, increasing awareness and developing better support. If you would like to know more about our plans for 2015/16 then please contact Amy Baker: amybaker@sclerodermasociety.co.uk
“The weekend was excellent not only to network and learn from organisations across Europe but to also create a strategy which we hope will aid the Scleroderma Society in providing better support to youth within the UK. At the meeting there were two other organisations represented from the UK and one from Ireland. As a charity we are hoping to collaborate with these organisations to create the best provision possible.” Thank you to EULAR for covering all costs to enable the Scleroderma Society to attend.
Representatives at the Youth Strategy Meeting
Queen Alexandra Hospital Open Day - Portsmouth The Scleroderma Society was delighted to attend Queen Alexandra Open Day on Saturday 4th October. The open day was a wonderful success with hundreds of interested individuals attending. The charity disseminated resource to raise awareness and educate attendees about scleroderma. Thank you to Colin Beevor, Paula White and Queen Alexandra Hospital for offering the charity a free stand at the event. Bone and Joint Decade Conference The conference was attended by over 150 health care professionals from around the world all with an interest in musculoskeletal health. Our President, Dame Carol Black, presented on ‘The importance of good musculoskeletal health in the workplace’ and Amy Baker and Chloe Kastoryano were there to encourage the health professionals to sign up to our on-line medical community.
Europe Orphan Drugs Congress Next month Chloe will representing the charity, joining orphan (rare) drug developers, patient groups and over 500 key rare disease stakeholders to identify the challenges in producing these drugs and subsequently learn how we can rethink models for drug development, access and pricing. Chloe will provide a report on the conference in your next edition of Scleroderma News.
Medical Community The Society has undertaken a mail out to 10,000 GP surgeries in the UK to promote the work of the charity. The introduction of our new medical community will offer peer to peer support and education, along with a wealth of specialist resources.
EULAR Youth Strategy Meeting On the 9th – 11th October Amy Baker joined youth organisations across Europe in Tallinn for EULAR’s Youth Strategy meeting. The aim of the meeting was to create a strategy, which could be implemented in each nation to improve youth provision. Scleroderma News: AGM & Conference
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We’re updating our information booklets The Scleroderma Society is currently working towards gaining accreditation from The Information Standard. The Information Standard is a certification programme for organisations producing evidence-based health and care information for the public. To achieve The Information Standard the Society must undergo a rigorous assessment to check that the information produced is clear, accurate, balanced, evidence-based and up-to-date. 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. When you see The Information Standard quality mark on any of our materials, you can be assured that the information produced is reliable and creditable. This will help you make informed decisions, for yourself and for your family, when it comes to considering health and care options. The Scleroderma Society is working closely with The Raynaud’s and Scleroderma Association (RSA) in updating the information we provide you. We have prioritised a selection to send to clinicians and scleroderma experts and are currently working on the following:
Dental and Oral Aspects of Scleroderma Localised Scleroderma Systemic Scleroderma (Limited & Diffuse) Organs—Heart, Lungs and Kidneys Circulation and Raynaud’s
Look out for The Information Standard mark on our newly produced information booklets which should be with you in the New Year! Helpline Times The charity would like to inform you that the helpline service hours are changing. The helpline will now operate from 9am – 7pm every day with the answer machine picking up calls outside of these hours. The reduction in service hours has come after analysing call logs. The charity realises that the helpline is an important support resource but it is also important to ensure that helpline volunteers are only on duty when the service is in use.
The new helpline hours are 9am – 7pm every day. Calls received after hours will be picked up by answer machine and callers will receive a call back at 9am the next day.
To order your Christmas cards please complete the form below, cut out and send along with a cheque made payable to The Scleroderma Society Postal address: Christmas Cards, Scleroderma Society, Bride House, 18-20 Bride Lane, London, EC4Y 8EE Card Selection
Number of Packs
8x Sparkle Reindeer (£3.50) 8x Winter Robin(£3.50)
8x Santa Snow (£3.50) P&P included
Total £
Please provide the following details for your cards to be delivered: Name Address
Contact Number
If you would like to order your cards over the phone, please call 020 7000 1925 Scleroderma News: AGM & Conference
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Top Tips for the Winter Get a free flu jab Not only is flu unpleasant, but it can also cause serious illnesses, such as pneumonia or bronchitis, which can result in a stay in hospital. You are more at risk if you have a long-term health condition, are older, or are pregnant.
You can protect yourself against flu by getting an annual flu jab. You can get a free jab if you: are aged 65 or over; are pregnant; have a serious medical condition such as chronic heart, lung, neurological, liver or kidney disease or diabetes; have a weakened immune system due to HIV or treatments that supress the immune system such as chemotherapy; have had a stroke or TIA (transient ischaemic attack) or post-polio syndrome; are living in a long-stay residential care home or other long-stay care facility (not a prison or university halls); or are the main carer for an elderly or disabled person whose welfare may be at risk if you fall ill. Contact your GP or talk to your pharmacist if you think you might qualify for a free flu jab.
Eat well Eating regular meals will help to keep your energy levels up during winter. Have plenty of hot food and drinks. Plan your meals and keep your diet as varied as possible. Aim to include your daily five portions of fruit and veg. Remember that tinned and frozen fruit and vegetables count towards your five a day. Stock up on tinned and frozen foods so that you don’t have to go out too much when it’s cold or icy.
Heating your home effectively and safely Some of these energy-saving tips may seem obvious, but they can make a big difference when it comes to reducing your fuel bills. By setting your heating to the right temperature, you can keep your home warm and lower your bills. Your main living room should be around 21°C (70°F) and your bedroom should be 18°C (65°F). Above this and you may be wasting money; below this and you may be risking your health. Set your heating to come on just before you get up and to switch off after you’ve gone to bed. If it’s very cold, set your heating to come on earlier and to turn off later rather than turning the thermostat up. If you can’t heat all the rooms you use, heat the living room throughout the day and your bedroom just before you go to bed. Remember to close curtains and shut doors to keep heat in the rooms you use most. Heating your home safely is really important. Remember to get your heating system checked regularly, and keep your home well ventilated. Remember never to use an electric blanket and a hot water bottle together. Switch your appliances (such as TVs and microwaves) off rather than leaving them on standby. Do not use a gas cooker or oven to heat your home – it is inefficient and there is a risk of carbon monoxide poisoning.
Keeping the heat in Insulating your home not only helps to keep you warm and healthy, but it can also help to keep your heating costs down. Fit draught proofing to seal any gaps around windows and doors.
Make sure that your loft has at least 10–11 inches (270mm) of insulation. Any home with 4 inches (100mm) or less should have it topped up. If you have wall cavities, make sure that they are insulated too. Insulate your hot water cylinder and pipes. Draw your curtains at dusk to help to keep the heat generated inside your rooms. Make sure that your radiators are not obstructed by curtains or furniture.
Stay active We all know that exercise is good for your overall health – and it can keep you warm in winter. If you can stay active, even moderate exercise can bring health benefits. If possible, You can also visit our website for resources on help with try to move around at least once an hour. But remember to heating your home costs. speak to your GP before starting any exercise plan. Dress for the weather Wear lots of thin layers – clothes made from cotton, wool or fleecy fibres are particularly good at maintaining body heat. Wear shoes with a good grip to prevent slips and falls when Source: Public Health England walking outside. Scleroderma News: World Scleroderma Day
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Boost Your Mood
Get active Regular exercise isn’t just good for your physical health, it can boost your mental health too. According to the NHS, exercise can not only help people with depression, it can help pr event them fr om becoming depressed in the first place. Exercise is also especially useful for people with mild depression. To stay healthy, you should do 150 minutes of moderate-intensity activity every week. If you haven’t exercised in a while, start slowly and work up to 150 minutes. You could also ask your GP about the exercise on prescription programme, where exercise is prescribed as a treatment for a range of conditions, including depression. Talk about it Studies show that talking about your
problems may help you recover from depression as well as cope better with stress. You could, for instance, simply talk to someone you trust about what’s getting you down, or try joining a support group. Stay confident Avoiding things you find difficult – such as talking to other people or even driving – may seem tempting if you’re feeling low. But if you don’t stand up to the things that scare you, they will seem even more intimidating the next time you’re confronted with them. According to the NHS, if you face your fears – whatever those fears may be – they should start to fade. Cut down on tobacco and alcohol When you feel down, it may be natural to think that having a drink or smoking may make you feel better. However,
according to the NHS, cigarettes, recreational drugs and alcohol all make things worse in the long run. For instance, research suggests cannabis may be linked with mental illness, including depression. If you need help giving up smoking, ask about stop smoking support and products at your local pharmacy. Meanwhile, you can assess the effects of your drinking habits and get practical advice by taking the following online Drinking Self-Assessment Test at www.allabouthealth.org.uk/ party-season Get into a routine Make a habit of going to bed and getting up at your normal time, and make sure you get around seven to eight hours sleep every night. Try to stick to your regular meal times too. Take control Eating a healthy diet and getting a regular good night’s sleep can often help you to feel more in control as well as more able to cope. You could also try self-help techniques such as meditation, breathing exercises and try reading self-help books or online counselling, all of which may be more effective than you might think. If you find that your mood is persistently low then we recommend speaking with your GP or a support group: www.depressionalliance.org/howwe-can-help/self-help-groups.php
Scleroderma News: Treatment News
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Felicity Philp was diagnosed with Scleroderma in 2001 and looked for natural remedies to help her symptoms. “At the age of 29, I started to become sick. My skin became tight, my mouth was always dry and I was tired. Small things got me down, my psoriasis was red and raging, I had intestinal issues and heartburn. My puffy fingers and feet were sore and stiff and I experienced shooting, throbbing pains up my arms. I felt sick when I got cold and calcium deposits started to develop under my skin. I was diagnosed with Scleroderma then Raynauds, followed by Oesophageal complications. Luckily we were able to have four beautiful, healthy babies. During pregnancy I felt amazingly healthy but when our third baby was one, some of my old symptoms flared up again. I knew that there were drugs I could take to ease the severity of my symptoms but I thought I’d like to try something more natural before taking medication. I found a natural healer who told me to take myself off gluten, dairy, eggs, yeast, refined sugar, alcohol and caffeine, for 3 months then reintroduce each food type independently back into my diet to see if it triggered my symptoms. This was no small feat for me as I love food. But after two weeks on the diet I felt amazing. I started bouncing out of bed with vibrant energy and my aches and pains simmered down. But the most amazing thing was how unbelievably positive I felt. I had a very clear purpose in life and that was to be the best person I could be. The idea for the recipe book came shortly after starting the elimination diet – because there wasn’t one on the market that could help me. I started tweaking and creating recipes so that I could eat the food during the three month diet. Then I thought I should put these recipes together into a book to help other people to feel good.
After the birth of our fourth baby my good friends Kate and Julie joined me to help finish the book. Together we created ‘Friendship Food-Delicious Feelgood Food’ and we started our Company. Our aim was and still is to help others find simple, achievable, affordable health options to help nourish the mind, body and spirit and to enable people to live a happy, healthy and productive life. Since launching our book in May this year, the response has been so humbling and overwhelming. So many people have joined the Friendship Food journey with us. We love feedback and helping people feel good. For more information about our recipes please go to www.friendshipfood.com.au” Mint & Cranberry Crusted Lamb Ingredients Serves 6 2 kg approx. leg of lamb, deboned and evenly butterflied (ask your butcher to do this) 1 onion, peeled and quartered 3 garlic cloves ⅓ cup fresh parsley (tightly packed) ⅓ cup fresh mint (tightly packed) ⅓ cup raw cashews ½ cup dried cranberries ⅓ cup rice crumbs 1 tsp fine Himalayan rock salt 1 tsp fresh rosemary, chopped (or 2 tsp dried) ½ tsp ground cumin ½ tsp ground coriander 1 tbsp extra-virgin olive oil ½ tsp cracked black pepper 1 tbsp honey 2 tbsp water Process the onion, garlic, herbs, cashews and cranberries until finely chopped. Transfer to a bowl and mix with the other ingredients. Drizzle a little oil in the base of a large baking dish and place the butterflied lamb, skin side down, into the dish. Spread the herb mix over the top of the leg. Drizzle a little more oil and sprinkle some more salt over the dish. Bake for ½ hour at 200O Celsius. Then continue to bake at 165O Celsius for a further 1½ hours for welldone meat. Left to Right: Felicity Philp, Julie Rearden & Kate Owen
Scleroderma News: Healthy Eating
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Did you know that February is officially Raynaud’s phenomenon is a very Raynaud’s Awareness Month? It is a common condition that is estimated to national campaign and this year we’re affect over 10 million people in the UK, encouraging you to ‘LOVE your GLOVES’ with 9 out of 10 sufferers being female. to help keep warm during February, which For some people it is no more than a is statistically the coldest month here in nuisance and can be very mild but it can the UK. As temperatures can vary daily also be much more severe, interfering from 10 to minus 15 degrees, it is with one’s daily life. important to keep your extremities warm. It’s also important anyone showing signs of Upon exposure to the cold or even a slight change in Raynaud’s does not ignore it as it could be a sign of temperature unfortunately a Raynaud’s attack may occur and something more serious. the fingers and/or toes can change colour due to the restriction of blood flow. There are three colour changes, Throughout RAM 2015, the RSA will be sharing hints, tips white when the blood is prevented from reached the small and coping mechanisms that might help Raynaud’s sufferers blood vessels, bluish when there is deoxygenated blood and get through the winter months. Make sure you follow them finally bright red when the circulation is restored. Not on Facebook ( w w w . f a c e b o o k . c o m / everyone has all ‘three colour’ changes but it is usually the r aynaudsandscler oder maassociation) or twitter white phase, which comes first and is the most significant. In (@raynaudsuk) to benefit from these. certain cases Raynaud’s can be hereditary affecting more than one generation in a family. They need you to help spread awareness! We have included two posters with this edition of our newsletter and ask that, For more information about Raynaud’s Awareness Month, if possible, you get permission put one up in your doctor’s please visit www.raynauds.org.uk/raynauds-awareness-month surgery and another in your local community, whether that’s or contact the RSA’s Head Office on 01270 872 776 or in a school, on a village notice board, in your dentist, corner info@raynauds.org.uk shop, where ever you think it will get spotted and taken Thank you for your support. notice of the most.
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Scleroderma News: YP Face It
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#PieFace I immigrated to the UK in October of 2013 after spending six months here with my daughter and grandchildren. Dominique was diagnosed just short of her 16th birthday with Mixed Connective Tissue Disease with overlap. The overlap includes Juvenile Arthritis, Juvenile Dermatomycytis, Lupus and Scleroderma. There was no way I could live so far away in Canada, as things can change so rapidly. Luckily my grandparents were born here so I was able to obtain an ancestry visa. The UK is now home. In all the awareness campaigns that occur I frequently ask people if they have heard of Scleroderma. So far no one has known what it is. It became apparent that awareness needs to be increased. Often those with invisible diseases to the outside world are seen to be lazy, or drama queens. My grand daughter is neither of these yet at a time when friendships are so important many of her friends walked away. They have chosen to not get informed about her diseases, quit inviting her to outings, parties etc. It is heartbreaking for both Vicki (Dominique's Mum) and myself to witness how much this hurts her. With diseases such as this it is not only the disease that is hard to comprehend but the mental component of coming to terms with it is equally hard. After seeing how awareness for ALS grew with the ice bucket challenge and seeing someone do a pie in her face for scleroderma in memory of her Mum, Vicki and I decided to see what we could do to raise awareness and funds for scleroderma. For us this is very personal. We have grown interest in the challenge first by emailing our Facebook friends, then making public on Facebook. My spouse has taken posters to places where he stops as a driver and has grown support through his co-workers and friends. Vicki's 12 and 11 year old son and daughter have started to go door to door seeking donations for their challenges. Saturday August 13th they raised £70.I0. We have contacted local media and developed relationships with business. Our goal is to not only awareness about scleroderma but also to reach our target of £5,000.
Dominique and boyfriend Jake, after completing the challenge
If you would like to support this challenge you can donate by text: Text BLVE97 and amount (£3, £5 or £10) to 70070 or visit www.justgiving.com/Louise-Chabros If you are thinking of taking a pie to the face in aid of scleroderma then you can use #pieface to tweet our twitter handle @sclerodermauk
Chineham Dental Surgery During the sunny month of June, Mr. Laljee and his team from Chineham Dental practice took part in an independent Triathlon in aid of The Scleroderma Society. Collectively they ran 150k, cycled 100k and swam 2k. Everyone at the practice took part and with the support of patients and colleagues they raised a total of £2,985.71 (excluding gift aid). Well done and thank you!
The team from Chineham Dental Surgery Scleroderma News: Fundraising
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Prudential Ride London – Surrey 100 This year the Scleroderma Society had 5 cyclists taking part in Minimum sponsorship: £750 (exc. Gift aid) the Prudential Ride London 100: Chris Nutland, David Pooley, You can apply for one of our Gold Bond places by visiting the Derek Fontinelle, Steven Henny and Victoria Bale. website or speaking with Amy Baker: The Prudential Ride London 100 celebrates the legacy for cy- amybaker@sclerodermasociety.co.uk or 020 7000 1925 cling created by the London 2012 Olympic and Paralympic Games. The ride started in Queen Elizabeth Olympic Park then followed an 86-mile route on closed roads through the capital and into Surrey’s stunning countryside. Not only did our riders contend with leg-testing climbs but also the great British weather. Due to the extreme weather, relentless rain and high-winds the route was cut from 100 miles to 86 miles to ensure the cyclists were able to get around the course safely. Once again the Scleroderma Society had a cheering point at Newlands Corner to watch our cyclists whizz around the course but our flag succumbed to the high winds and we all left drenched to the core. Even though the rain didn’t stop until half way through the afternoon all of our cyclists completed the course and even crossed the finish line with a smile. Thank you to our wonderful cycling team 2014 who have raised an amazing £9,556.12 for the charity. Applications are now open to join Team Scleroderma 2015 at the Prudential Ride London 100. The Scleroderma Society David Pooley Celebrating has 6 Gold Bond guaranteed places for the Prudential Ride London 100 2015. To support you through the challenge, we will offer you: - Team Scleroderma Welcome Pack - Cycling Top - Regular E-newsletters - Dedicated fundraiser to support you through the challenge
Victoria Bale showing off her medal at the finish line "I can report completion of the London 100 ride cut to 86 miles due to the conditions. (I did 10 miles riding to the start, so it was 96 for me). Anyway what's a bit of rain between cyclists? (Correction lashing rain!). Riding around the sights of London with no cars and riding up the Mall with loads of cheering spectators was amazing. Perhaps the most memorable part of yesterday was the display of British spirit, not just the riders but the marshals and spectators turning out in those vile conditions. The fund is now up to £3,500 which is way beyond what I thought possible, so a big thanks to everyone who has sponsored me. If Martin could, he would thank you all too for your generosity. The money will go towards easing the suffering of others with this horrible condition. Next year? Yes bring it on, as I want to do the full 100 including the climbs. If I can get a place.” - Victoria Bale’s account the day after completing the Prudential Ride London 100 2014.
Any gift you give to the Scleroderma Society is greatly appreciated but this Christmas please consider giving a regular gift. A regular gift makes a huge difference to the lives of diagnosed individuals, as a regular gift allows us to plan for the future. We know that we will have a steady income stream that we can rely upon. As a regular giver you will receive updates on how your gift is supporting the charity to achieve more. You can set up a monthly donation through our JustGiving page: www.justgiving.com/sclerodermasociety or by speaking to Amy Barrick on 020 7000 1925 or via email: amy@sclerodermasociety.co.uk
Scleroderma News: Fundraising
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Meet your Local Fundraising Contact
Hayley Wilson I am 22 years old and live in West Yorkshire. When I was 6 years old my Dad was diagnosed with Scleroderma. I didn’t understand what this meant at the time all I knew was that my dad had to go to hospital a lot. He was always an active person but then he started getting tired quicker and couldn’t do things that he wanted to. When I was younger I got upset because I saw other kids playing games and running around with their dads but mine couldn’t do that much and when he could it wasn’t for long. He had this illness for 12 years and as I got older I understood what was going on and aimed to help my mum look after my dad as much as I could, I even tried to get home early on school nights in case she needed any help or my dad wanted some company. We started to struggle as the illness got worse and we found out he had other illnesses as well. I was that determined to help that when I took my school dinners with me I would try and sell my food and the money I would get I would save up, thinking that it would pay for tablets or anything that was needed to help my dad.
We all struggled with the illness until he passed away nearly 5 years ago. I helped my mum and brother a lot after he passed, or at least as much as I could. It still is upsetting but at least now I hope he isn’t in pain anymore and I try to do my best to make him proud. I volunteered to become a local fundraising contact because I feel, this illness needs more people to be aware of it. I also volunteered because as a daughter I know what it feels like to go through this illness, I think the families of the people who have this illness need to know that people are out there doing something to try and help and that there are people who they can talk to. I have found running my own events quite interesting. I love thinking up new ideas for different events and especially if I get to make hand crafted things. There have been a few times where I was doing an event on my own so not all of it has been easy but I have still enjoyed it none the less. I recruited my own fundraising team from friends and family that knew my dad. Other people offered help as well which has been nice as I know that people are hearing about what I am doing. This year I think I have raised about £300 -£350. The next event we are preparing for is a Christmas fair in November. At this event we will be doing home-made craft and also home made buns and cakes.
Hayley with her fundraising team
IF YOU ARE INTERESTED IN BECOMING A LOCAL FUNDRAISING CONTACT THEN TAKE A LOOK AT THE ROLE DESCRIPTION ON OUR WEBSITE. The charity has a variety of volunteering roles from volunteering at the Society’s office to supporting diagnosed individuals and their families on our helpline. Volunteers are vital in supporting the charity, so if you have a couple of hours that you are able to spare then please do think about spending this time with us! You can view all of our volunteer roles on our website or speak with Amy Baker: amybaker@sclerodermasociety.co.uk or 020 7000 1925 Scleroderma News: Volunteering
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The countdown to next years London Marathon has already begun. At the Scleroderma Society we always get excited about this event. The London Marathon is the most prestigious running event in the UK with over 35,000 runners taking on this iconic course every year.
Running Vest Regular E-newsletters Dedicated fundraiser to support you through the challenge
Date: 26th April 2015 Team Scleroderma London Marathon (LM) 2015 is already Distance: 26.2miles taking shape with Ian Cox joining as a ballot runner and Eli Minimum Sponsorship: Myers and Greg Tytherleigh accepting a Gold Bond place from £1,800 (excluding gift aid) the charity. The charity still has Gold Bond places available and if you are interested in running the London Marathon, supporting the Scleroderma Society and changing the lives of diagnosed individuals we want to hear from you. Application forms are available via our website or by getting in touch with Amy Baker. As part of Team Scleroderma LM 2015 we will offer you: Team Scleroderma Welcome Pack
Eli Myers My name is Eli Myers and I have just finished sixth form in Essex, I've always loved running as well as raising money for charity, so I thought what better way to combine the two, than to run the London Marathon. The reason I am raising money for the Scleroderma Society is because my grandma passed away from this disease, so I want to bring as much awareness as possible to this terrible disease, as well as raising as much money as I can to help fund the wonderful work of the Scleroderma Society. I hope I can serve as an inspiration to others! https://www.justgiving.com/elimyers
Find out more about who has joined our charity team this year by reading their stories below.
Karl Hodgson celebrating at the London Marathon 2014 finish line.
running in 2015 was something I just had to do in memory of my mum. I needed to secure a place and knew that the Scleroderma Society might help, as my Step-Dad, Richard Bennett, had run some years before. Fortunately, Amy Baker and her colleagues were able to let me have a Gold Bond place and so my journey began. Before this, I had never even gone jogging, so running any sort of distance was a distinctly unnatural and unappealing prospect! I started slowly, doing 3 miles (having to stop and walk 6 times!) and have gradually increased my fitness. I now run 56 miles twice a Greg Tytherleigh week, with a longer My mum, Gail Bennett, battled against run at weekends. I ran my first ever half Systemic Scleroderma for 10 years. She -marathon at Tonbridge on 28th never gave in, but the disease eventually September and was delighted with my took her from us at the age of 60. th After she died on 10 April, I spent time time of 2 hours, 3 minutes. Actually, I was really pleased just to have finished! with my family and then travelled back If you can, please sponsor me here: through London on the day of the London Marathon. The feeling came to https://www.justgiving.com/GregTytherleigh/ me with such clarity and comfort, that Scleroderma News: Fundraising
Ian Cox I am taking on this challenge as I have always admired the dedication people put into completing this race. I’ve never run a full marathon before so I have a lot of training to do, but it’s a once in a lifetime opportunity to run the ultimate race and I know my Dad will be with me all the way. My Dad passed away in January 2014, complications due to Scleroderma stopped him getting the treatment he needed and I want to raise awareness and funds for research so that hopefully one day a cure can be found. Unfortunately Dad never saw me cross a finish line because I was just getting into running events as he was taken from us. I like to think he would be proud of me for completing such an amazing achievement and also contributing something to helping others with the same illness. https://www.justgiving.com/runcoxy
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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. Here’s an update on some of the projects we are currently funding:
Wax Baths The use of heated wax bath treatments for the hands in people with scleroderma: do they make hand exercises more effective? By Consultant Rheumatologist Will Gregory and Colleagues, Salford Royal Hospital The aim of this study is to assess the efficacy of daily wax bath treatment in patients with scleroderma. Secondary aims are to assess the feasibility and tolerability of daily wax bath treatment in patients with scleroderma. Research questions: Does the use of home wax baths in addition to a standard hand exercise programme in people with scleroderma improve their hand function? If any changes are seen at the completion of a 9 week programme, are these changes sustained 9 weeks later after the intensive exercise and wax treatment period has ceased? Background: The purpose of this study is to compare the effects of daily hand exercises with or without daily home wax bath hand treatment in people with scleroderma. The hope is that we can prove scientifically that using a wax bath makes the hand exercises more effective. If we don’t get such clear results then the hope is the results when further analysed may suggest certain groups of people with scleroderma who may get better effects, e.g. early after diagnosis, or having limited versus diffuse disease. Method: This is a single centre randomised controlled trial of parallel group design. The “single centre” is Scleroderma News: Doc Spot & Treatment News
Salford Royal Hospital and for reasons of getting ethical approval and ease of performing the study this does mean that only people with scleroderma under regular care at Salford are eligible for this study. Parallel group design means there are two treatment groups; research participants are randomly put into one of these two groups. The two treatment groups are wax bath versus no wax bath. Both groups in addition perform regular, daily hand exercises as part of standard care. Participants in the intervention group are asked to use their wax bath daily as a 10 minute heating treatment to their hands prior to their home exercises. In the control group, participants perform the hand exercises without any preexercise heat treatment. The assessor is kept blind to the participants’ groups until after the last participant has completed the final assessment for the study, this is to ensure there is no bias during the measurements performed on the participant by the assessor. Results: First participant was recruited and had their measures done early April 2014. Five months on, we are now just over half way through recruitment, with 20 people registered for the study. A few people have now completed the 18 weeks of the study. Whilst the results can’t be shared at this point, mostly due to the blinding process, nearly all the participants have fed back that have felt a difference to their movement and function from doing them. To keep the assessor blinded the wax bath treatments
have not been discussed. The people in the study are a good crosssection of the scler o der ma population; half have limited, half have diffuse disease; we have some who are quite newly diagnosed, others have had scleroderma for 20 years. This study is entirely funded by the Scleroderma Society, and the research team are very grateful for this award and the work it has enabled them to do.
An Observational Study
Treatment outcome in early diffuse cutaneous systemic sclerosis By Xiaoyan Pan and colleagues, Hope Hospital, Salford Background: In the ‘diffuse’ form of scleroderma, skin thickening can progress fairly rapidly, usually starting in the hands, face or feet but then spreading upwards to involve upper arms, thighs, or trunk. Those affected are also at high risk of developing lung, kidney or heart involvement especially in the first 3 years of the illness. A number of different drugs with effects on the immune system (called ‘immunosuppressants) are currently used by doctors in the treatment of early diffuse scleroderma. However, all can have side effects and the efficacy of the different drugs is not fully established.
The objective of the European Scleroderma Observational Study (ESOS) is, by careful recording and Page 13
analysis, to examine the effectiveness of different immunosuppressant drugs currently favoured by doctors in treating scleroderma. Information obtained through ESOS will, in the future, help to inform doctors’ treatment decisions. ESOS is supported as part of the EULAR (European League Against Rheumatism) Orphan Disease Programme which aims to further knowledge of why scleroderma develops, and how best to treat scleroderma. To allow enough patients to be recruited into the study to provide meaningful results, ESOS opened 44 recruiting centres in 16 European countries between 2010 and 2012. The approval processes for the different countries took longer than planned, with the result that recruitment was initially under target. We therefore amended the study protocol and opened another 6 recruiting centres in Austria, Canada and USA. We also publicised ESOS at international conferences to facilitate the recruitment. Despite this, a 12-month extension of recruitment was essential to hit our target recruitment. Funding from the Scleroderma Society and the Raynaud’s and Scleroderma Association has allowed us to extend the ESOS recruitment period by one year. We have now completed target recruitment and 322 patients have been recruited! The last patient will complete the study in one year's time. We are very grateful to the Scleroderma Society and the patients who have participated in our study. We would not have been able to go this far without your support.
Renal crisis Genetic analysis of scleroderma renal crisis By Professor Chris Denton and colleagues, Royal Free Hospital, London The internal organ complications of systemic sclerosis (scleroderma) are diverse and represent a major challenge for patients and doctors alike. It is curious however that no two scleroderma cases seem the same in terms of the pattern or extent of internal organ disease. We suspect that a number of genetic factors might determine the pattern of scleroderma and this is an important focus of current research. Although scleroderma renal crisis is an uncommon complication of systemic sclerosis (scleroderma) occurring in around 1 in 20 patients overall, it is dramatic and serious. In the past renal crisis was the most lethal complication of scleroderma but fortunately with development of ACE inhibitors, a class of drugs used to treat high blood pressure and heart failure, the outcome has dramatically improved and in most patients’ renal crisis is now treatable. However it is critical to make the diagnosis as early as possible to allow treatment and one way to do this would be to identify which patients are most at risk. Blood tests help, especially the autoantibody tests such as anti-RNA polymerase antibody (ARA). Patients with this antibody have higher risk of renal crisis and so this test is helpful in the clinic. However, we suspect that there are genetic risk factors that might help predict renal crisis or shed light on the cause of this complication. We have undertaken a very specific genetic study, to look for any specific genetic markers that are associated with renal crisis.
We have compared nearly 100 patients that have had renal crisis with a similar number that have been followed for several years but not had this complication. This very focused study is possible because almost all renal crisis occurs within the first 3 years of scleroderma and so cases that have not had a renal crisis within this time are very likely to be protectScleroderma News: Treatment News
ed from the complication. In this way we can identify factors that might increase risk or that may protect patients. We are especially interested in those patients that have ARA positive but have not had a renal crisis as we think these patients may be protected in some way from the risk. The first analysis has been performed using high density “gene chips” that screen DNA for markers that may be relevant. We have found a number of genes that may be relevant and are currently exploring other cases and groups of patients to confirm the results. Once this is done we expect to publish our research so that other groups can compare our findings and hopefully this will all lead to a better understanding of scleroderma. Support from the Scleroderma Society was invaluable to develop better understanding of scleroderma renal crisis and this is reflected in our recent paper that focuses on endothelin as a potential factor in this complication. The genetic work that is ongoing is likely to shed more light on this and other key disease mechanisms.
We also provide grants to assist with the purchase of specialised laboratory equipment. A recent grant provided the Royal Free Hospital with equipment that allows researchers to identify protein molecule development, specifically the ones that are able to promote inflammation and fibrosis. Their levels may provide an important indication of how ‘active’ the disease process is. Researchers can also monitor their behaviour, examine their function and perform experiments treating the cells with drugs and other small molecules to determine whether there is any influence on their scleroderma characteristics. Professor David Abrahams, UCL, says “These type of studies give us some of the earliest indications of whether certain drugs or molecules might be of benefit in scleroderma thereby providing a platform for further studies…[the grant] has provided us with an invaluable resource which will be operational for many years into the future.” Page 14
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 Systemic Scleroderma and things were looking up. I’ve come off Methotrexate, but just lately I am having really bad mood swings and keep crying. Is this normal? Methotrexate is a very commonly used treatment for rheumatic diseases including rheumatoid arthritis and also used in scleroderma. It may be effective in both localized and systemic forms of the disease and has been demonstrated to be beneficial in clinical trials. Other immunosuppressive drugs are also used such as mycophenolate mofetil or cyclophosphamide and your doctors will decide which treatment is best for you depending upon the pattern and extent of scleroderma. Once the disease stabilises or improves it is often possible to reduce the dose or stop methotrexate. It is common to have emotional changes in scleroderma, like any severe chronic disease that impacts on function and quality of life. Some treatments such as steroids can also affect mood and lead to “mood swings”. If necessary you should discuss with your healthcare team as it may be useful to consider what direct treatment approaches for these broader aspects of scleroderma are available. Has any research been done on natural pain relief that my wife could take without side effects? We encourage all of our patients to try vitamins and other supplements that might benefit various aspects of scleroderma and Raynaud’s phenomenon. Scleroderma specialist nurses can often give very helpful advice about supplements and vitamins to try. However we advise that this should be in addition to more standard treatment approaches as “complementary therapy”. There are some clinical trials supporting use of treatments that work as antioxidants or modify blood vessel
reactivity. Unfortunately it is generally difficult to undertake clinical trials of what might be termed “natural remedies” in scleroderma as well as other conditions because design on support for clinical trial is especially difficult. I am not aware of any specific research looking at “natural pain relief” in scleroderma although the field may draw on results of research performed in other medical areas if it is persuasive. I recently heard of silver cream. What are its benefits and where can I get it? There is a very useful silver containing cream called “silver sulphadiazine cream” that is used for the treatment of skin infection and this can be useful in some digital ulcers on the fingers in scleroderma. It is also called Flamazine®. There are also silver impregnated dressings that can help treat skin ulcers. Silver in these treatments helps to treat infection but you should discuss with your doctor or pharmacist before using as some patients have allergic reaction or can suffer toxicity. Although there are several other topical preparations available that contain silver, described as “colloidal silver” these cannot be recommended without more evidence of benefit in clinical trials. There is no evidence that they improve scleroderma skin. 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). It is not painful and I only discovered it by accident. Have you heard of others getting this sort of thing? 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
Scleroderma News: Doc Spot & Treatment News
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. Please can you advise on how best to treat and prevent dry flaking skin on a forehead spreading onto the rest of my face? It is extremely sore and painful and is a vicious cycle of hard dry flaking and peeling to redness. Scleroderma can be associated with dry skin as the affected areas often lose the sweat glands and other structures that maintain normal texture. In addition it is possible to develop dry and flaky skin due to related conditions such as dermatomyositis or lupus that can occur in overlap or mixed connective tissue diseases. Other causes include superficial yeast infection. In general it is important to use hydrating or moisturising preparations that help dry skin from all causes. If this is not sufficient you should discuss with your doctors or specialist nurse in case further tests or a referral to see a dermatologist is appropriate. If you have a question for the Doc please email: info@sclerodermasociety.co.uk Page 15
Teenage Testers for YP Face It Researchers at the Centre for Appearance Research in Bristol have built a website called YPFaceIT.co.uk to help teenagers who are worried or upset because of a condition, injury, or treatment that affects the way their face, skin, or part of their body looks. There are lots of conditions and injuries that affect our appearance. For example, conditions affecting the skin (such as Scleroderma), birthmarks, hair-loss, scars or limb loss resulting from an accident or treatment for a disease. Some young people may worry about the way they look or be upset by staring, teasing, bullying or being asked questions. We know that this can affect their confidence and happiness and we think these young people could feel better if they had some support. YP Face IT was built with the help of young people, psychologists, doctors and nurses. YP Face IT is for 12—17 year olds. It has 7 sessions, one to be done each week. Each session takes at the most 40—50 minutes to work through. It has films, activities and advice from other teenagers who have a visible difference. Young people work through the sessions at their own speed and can listen to audio if they don’t want to read. It also has a discussion forum where the young people can talk to each other if they want to. The website is now ready to be tested and the team are looking for young people with appearance concerns to help evaluate it. If you are interested in helping or would like to receive further information about YP Face IT please contact Claire Hamlet: claire.hamlet@uwe.ac.uk 0117 328 3513
Greetings from Australia Robyn Sims, President, Scleroderma Australia Inc. Scleroderma Australia was formed in 2006 and operates in much the same manner as FESCA. Australia has 3 Scleroderma organisations in New South Wales, Queensland and Victoria and as you would realise, our beautiful wide brown land has the disadvantage of great distance between towns and cities, which can be a problem for many of our friends with scleroderma. Arthritis Western Australia and Arthritis South Australia are affiliated with Scleroderma Australia. Since 2006 we have standardised all our booklets and brochures and put together new brochures where our members feel a need. Our latest brochure was written for those people who experience difficulties when having blood draws. Our 3rd Edition of Understanding and Managing booklet was produced this year as treatments have improved and more information was available. The creation of our umbrella organisation has helped br ing our State organisations together and we can pull together in sharing resources and ideas. Our first National newsletter Scleroderma News: Treatment News
was produced recently. It has been wonderful to have been able to send a representative to the three World Systemic Sclerosis Congresses in Florence, Madrid and Rome. Networking with organisations from all around the world has certainly been a great way of connecting, sharing and raising awareness. We are extremely pleased that our icon, the sunflower, has spread its seeds to many countries. We chose the sunflower as it was symbolic of the way our members also turn to the sun for warmth. When watching cycling events across Europe we often see those fields of sunflowers. This magnificent flower which will grow in any climate has proven to be popular. We thank those countries and FESCA for their support with adopting this symbol. As World Scleroderma Day on June 29 is our mid winter we do struggle with ideas for promoting this day. Over the past two years we have asked our members and friends to join us in our “Snuggle Up for Scleroderma” online event. This has been a great success. Our members
are very happy to be sponsored to cuddle up for the day. Part of the success of this event is the fact that our members can readily join up knowing that they will be able to make it on the day!! In recent years Scleroderma Australia have assisted our neighbouring countries, Indonesia, the Philippines and New Zealand by providing booklets and brochures and assisting with translations where needed. These three countries all held special events on World Scleroderma Day One of the great successes of the past two years has been the instigation of our online support group. As mentioned previously many people with scleroderma live in remote areas or are unable to attend support groups due to health issues. Our Facebook closed support group has gone from strength to strength. Our monitors do a wonderful job in keeping the group supportive, educational and perhaps most importantly of all, uplifting with many a wry joke at our own expense. Page 16
Local Support Group News & competitions East Anglia Seven of us plus some 'carers' met on 30 September at Felixstowe. Jacky and Margaret gave a brief presentation on the booklet 'Understanding & Managing Scleroderma'. This seemed to help people and provoked a lot of discussion, which then led into very useful general discussion. We decided to meet again in the spring with warmer weather on the horizon after the winter. As we have quite a lot of new members, Margaret will repeat her very successful session on exercises. Realistically, this group covers mainly Suffolk and we would be pleased to see more new people. Jacky March 01394 286637 or jacky@sclerodermasociety.co.uk
EURORDIS Photo Contest The EURORDIS Photo Contest is an opportunity to communicate visually the many diverse facets of living with a rare disease.
West Midlands The next meeting of the West Midlands support group is Thursday 26th March at 12.00 in Cafe Zest, House of Fraser Birmingham. All welcome! Jane Beach 01527 459 552 or jane@sclerodermasociety.co.uk
If you are searching for inspiration the Scleroderma Society will be sharing photos from EURORDIS Photo Contest 2013 on Facebook and Twitter from Monday 10th November.
If you are interested in sharing your images of living with scleroderma, then just log on to the EURORDIS website and upload your photo by December 16th. www.eurodis.org/photo-contest This year 3 prizes (Apple iPad Air) will be awarded in 3 different categories:
Public Vote: Awarded to the photo that receives the most votes. Expert’s Choice: Selected by professional fashion photographer Rick Guidotti. EURORDIS Favourite: Chosen by the EURORDIS Staff. 2013 Winner: Katerina from Greece
Hampshire Tracey James would like to hold a Christmas (informal) gathering of local members at her home in Portsmouth on Monday 22nd of December between 1- 4pm. Contact Tracey by email tracey.james93@ntlworld.com Bedfordshire The group meets every 2-3 months at Frosts Garden Centre. If you are interested in attending the group contact Rita Boulton. rita@sclerodermasociety.co.uk
Break Time Can you master the twister? I am Susie sitting in a shoe shine shop. Where she sits she shines, and where she shines she sits. How can a clam cram in a clean cream can? How much ground would a groundhog hog, if a groundhog could hog ground? A ground hog would hog all the ground he could hog, if a groundhog could hog ground. How much pot, could a pot roast roast, if a pot roast could roast pot?
We would love to expand our local support groups. If you are interested in becoming a local support contact and developing a group in your area then please contact Amy Baker: amybaker@sclerodermasociety.co.uk or 020 7000 1925. Scleroderma News: Local Group News & WIN!
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Local Contacts & Support Services Local Group Co-ordinator: Liz Holloway liz@sclerodermasociety.co.uk, 01243 539466 Bedfordshire Rita Boulton rita@ sclerodermasociety.co.uk 01767 312 544
East Sussex Rosanna Clifton rosanna@ sclerodermasociety.co.uk 01424 426 738
Buckinghamshire & Hertfordshire Marilyn York marilyn@ sclerodermasociety.co.uk 07702 592 387
East Yorkshire Lynn Hind lynnh@ sclerodermasociety.co.uk 01482 354 312
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
Essex, Kent & East London Amanda Thorpe dollydumpling23@gmail.com 01702 344 925 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
North East Scotland Susan Wilson susan@ sclerodermasociety.co.uk 07740 185 627 North Wales Kate Owen kate@ sclerodermasociety.co.uk 01492 515 834 Oxfordshire & Berkshire Melanie Bowen melanie@ sclerodermasociety.co.uk 01865 517 033 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: Notice board
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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: Amy Barrick 020 7000 1925, amy@ 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 London Royal Brompton Hospital Respiratory queries: Lucy Pigram 07758 894 3175
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
Write to: The Scleroderma Society Bride House,
18-20 Bride Lane, London EC4Y 8EE
Phone us:
020 7000 1925
To find more specialists in your area visit the website or contact the office.
Email the editor: info@scleroderma society.co.uk Proof Reading: Rosemary Goodwin Roger Sinclair-Clarke Printing & Publishing: Jarvis & Company
Manchester Hope Hospital: Liz Wragg and Catherine Lambe 01612 060 192
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Scleroderma News: Contacts
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