February Newsletter 2014 by Scleroderma Society UK

Make a positive change!

Scleroderma News February Issue 2014

Readers Top Tips Scientific & Medical News More Inspirational Stories

New Year New Attitude 10 NEW YEARS RESOLUTIONS YOU SHOULD KEEP PAGE 5

KEEP ON MOVING PAGES 14-15

Welcome! Happy New Year! Welcome to our first edition of Scleroderma News 2014! As I write this on New Year’s day, I look forward to the year ahead with great excitement, despite the howling wind and pouring rain outside! Looking back to 2013, we ended the year on a high with the appointment of our fundraising and volunteer coordinator, Amy Baker, who joined us in November and many of you will no doubt have had the pleasure of speaking and being in contact with her already. We go into 2014 in an even stronger position as an organisation, which will be further enhanced by the work of our new project coordinator, Chloe Kastoryano, who will be starting at the end of January, working two days a week on much-needed projects and taking some of the burden of day -to-day work off the trustees, whose time is needed elsewhere in the Society management. We continue to build our collaboration with the Raynaud’s and Scleroderma Association, and will be supporting their upcoming Raynaud’s Awareness Month in February. Chloe will be leading us through our leaflet updates in collabora-

tion with the RSA. Our new leaflets will be jointly produced with the costs shared by both organisations. The next World Congress on Systemic Sclerosis in Rome is fast approaching at the beginning of February and we’ll provide reports from that in the next newsletter. It is always a very useful occasion with lots of interesting and relevant information on advances into medical and scientific research regarding scleroderma. Finally, an extremely warm thank you from everyone at the Society to all our members and supporters whose unprecedented goodwill and energy throughout 2013 enabled the Society to continue its important work and fulfil its charitable objectives of providing support, awareness and research into scleroderma. With warm regards and best wishes for the new year,

Susie

Editor’s Note: Hello everyone! Happy new year, and welcome to this winter issue of Scleroderma News. This time of year is about casting out the old and welcoming in the new, there is no better time for an attitude adjustment. This issue could change your life!

The Scleroderma Society has adopted the sunflower to represent our organisation, sunflower pin badges are available for a small donation, to buy one please contact: amy@ sclerodermasociety.co.uk

Scleroderma News: Welcome

The end of 2013 brought with it a tragic shock, with the death of my friend Richard Aransibia, known to many in the Scleroderma Community. You can read about his journey on pages 6-7. Richard was an optimist, a true inspiration. In 2014 I will be living my life as he would have, to the fullest! I hope you enjoy reading my new year’s resolutions, on page 5! Perhaps you have written your own resolutions, or compiled your own 2014 ‘to do’ list? Why not share this and much more with other readers in the next issue of Scleroderma News which will be out in June? I am always interested in hearing what you’ve been up to! As always, deadline for content, the first of the previous month . Email me on hollie@sclerodermasociety.co.uk. Until next time…

Hollie xXx Page 2

Society News The Latest News - Winter Welcome Amy “I am Amy Baker and I have been with the Scleroderma Society for three months now as a Fundraising and Volunteer Coordinator. Since graduating in 2010 I have worked for several diverse charities in a similar capacity. I thoroughly enjoy working within the charitable sector and look forward to bringing my skills and knowledge to the Scleroderma Society over the coming year. I have always enjoyed volunteering and fundraising and have taken part in many events in my spare time, from reaching Everest Base Camp to jumping out of a plane, so whatever event you may be planning please get in touch for advice and a helping hand. I look forward to hearing from many of you during 2014.”

Helpline News: Continued Professional Development Our helpline goes from strength to strength. We have seven well-trained and very experienced volunteers now, most of whom are able to speak first hand about Raynaud’s and Scleroderma. When callers ring the helpline they don’t want to listen to our ailments though, what they want is help with their own individual worries and concerns. Not all callers suffer with Scleroderma and Raynaud’s. They may be calling about a friend, a loved one, or a relative. Often we receive calls from GPs and clinicians. For example, physiotherapists and occupational therapists who enquire about the disease, or a specific issue to enable them to improve the quality of life for someone that they are working with or treating. We are always looking for ways to improve our services through training or other accredited development. Recently, Rosemary and Helena attended a Helpline Partnership conference in Peterborough. The event, for the helpline sector, brought together many organisations to share best practice and knowledge. A good example of this was from Loughborough University Helpline Research Unit who talked about their research into “improving helpline interactions”. This was a very engaging and informative session and we brought back lots of information that can be passed on,

Scleroderma News: News

to continue improving our services. Another session was on Helpline Self Evaluation where we got to talk and get down to some very practical work thinking, challenging, and mapping out what each organisation’s helpline really wants to achieve. We came away with some groundwork for development with our volunteers at the next training session. Other sessions were on “handling emotions”, “difficult calls”, and “best practice in supporting volunteers”. It was a busy and informative conference and meeting other charity helpline volunteers and staff added to the success of the day. Watch this space for more news and progress. If you are interested in volunteering on the help line please contact: helena@sclerodermasociety.co.uk. If anyone you know is need of support or advice about scleroderma then please pass on our helpline number: 0800 311 2756

Local Groups News: “I am delighted to be able to welcome several new local group contacts in various parts of the country. Alex is in Cornwall, Anne is in Devon, Lynette joins Diana in the Derbyshire area, Jessie is in the North East & Jane is in the West Midlands. It is wonderful to have so many counties covered & I must thank all of the above very much indeed. Because there are so few people in the UK with scleroderma, it is not an onerous job & I hope the new contacts will enjoy it. Check the website or the list in the newsletter to see if your own area is covered, otherwise contact me! (page 23) Best wishes to all members for 2014.” Liz Holloway

PHD Research with UCL The trustees of the Scleroderma Society have decided to participate in the cofunding of PhD research in co-operation with UCL (University College London). We are excited about this opportunity to become directly involved in PhD research needed in the field of scleroderma. PhDs usually last for three years, during which time we will report back with updates and news from the research and the labs. The research at UCL will be supervised by Prof. David Abraham and Prof. Chris Denton who specialise in scleroderma research. The Society will receive recognition on presentations given at scientific meetings and symposia and in any publication arising out of the work, which will contribute to the research puzzle in trying to better understand and develop treatments for scleroderma. We are very excited about this opportunity to become involved in research at grass roots level and look forward to visiting the labs and reporting back on the experience. We will let you know when the exact subject of the PhD is decided and when it will start.

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A Review of Paul Klee: Making Visible 16th October 2013 – March 2014, Tate Modern “Yesterday, the 2nd of January 2014, I went with my mum to see the Paul Klee exhibition at the Tate Modern in London. We were both at the Tate in the summer and when we learnt that the Klee exhibition was going to be shown we were, from that moment, both very keen to see it largely because of the connection with scleroderma – Klee had the condition. My grandfather was diagnosed with scleroderma at the end of 2000 (the same time my mum discovered she was having me) and through our research on Paul Klee we have discovered many uncanny similarities between my granddad and Paul Klee which gave the trip a very personal perspective.” Florence James (aged 12)

Paul Klee was born in Switzerland to a German father and Swiss mother in 1879. He was a talented artist that, the Tate recognise, cannot be described as having one style of art – most of the paintings we saw yesterday were so different. Klee lived through many difficult times. He struggled to get recognition as an artist. He never had the security of full time work because his art was seen as radical but it was also due to Klee living in a time when there were political, social and economic changes causing hardship to him and many others. What we did learn about Klee was his determination to work through hard times and we both left the exhibition with a great deal of respect for a great artist. As mentioned earlier Klee’s art has various different styles. There are many paintings that are dark and show distorted figures and shapes. Others are bright and very colourful, whereas some are comic, highlighting Klee’s great sense of fun. Klee had his first exhibition in 1910 but was told by the curator that the visiting public largely disliked his art work. Klee was not put off by that and continued to produce paintings and was finally being recognised as an artist in 1920. Despite having no teaching

Scleroderma News: Inspire Feature

experience he began teaching at the famous Bauhaus in Germany in 1921 and became known world-wide by the 1930s. Despite his recognition it did not give Klee any stability. It was very sad to learn that Klee had to flee Germany in 1933 and that the Nazis destroyed much of his art work describing it as ‘degenerate’ art. In 1935 Klee became seriously ill and struggled with the serious symptoms of scleroderma. his struggle with scleroderma is very obvious, in his works from that time. There are many selfportraits which show Klee coping with the condition and although we were dreading seeing some of Klee’s final works (as we believed it would be very sad) we were both in for a great surprise. The final room at the exhibition starts by stating that Klee fought his ‘illness’ and although he knew he was very seriously ill did not want his

final paintings (in 1939 and 1940) reflecting his ill health and he produced the most beautiful and vivid work. It took all his strength to produce these paintings when he felt so awful but, we feel, they show Klee’s true character and genius. His final painting was called ‘Vase of Flowers’ and shows the most beautiful display of brightly coloured flowers with huge blooms in a glass vase. It was a wonderful end to a fascinating display of imaginative art work which at times was upsetting to see. Klee died on the 29th of June 1940. We would recommend this exhibition to anyone who wishes to see how a great artist overcame many hardships and coped bravely with scleroderma to produce some beautiful paintings. By Tracey James

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10 New Year’s Resolutions For a Happier Scleroderma Life 1. Laugh every day:

5. Do something unfamiliar!

Admit it, at some point we’ve all experienced laughter as the best medicine. Patch Adams once said: “Remember laughing? Laughter enhances the blood flow to the body’s extremities and improves cardiovascular function. Laughter releases endorphins and other natural mood elevating and pain-killing chemicals, improves the transfer of oxygen and nutrients to internal organs. Laughter boosts the immune system and helps the body fight off disease, cancer cells as well as viral, bacterial and other infections.”

In 2014 why not try mixing it up a little? Try doing the opposite of what is expected of you! I’m not suggesting we all hurtle out of a plane or unite in a synchronised bungee jump, (though if you’ve got it in you – fabulous!) But why not attend an event that you’ve previously thought might not be your cup of tea – you may be surprised!

2. Spend time with family: Princess Diana once said: “Family is the most important thing in the world.” In 2014 we should all take some time to let our families know how much they are loved and appreciated beyond words.

3. Appreciate your friends: I have a close group of best friends who have been by my side throughout the darkest and happiest points of life, they have always been exceptional, and continue to never stray more than a phone call away. However, like so many, when it comes to those further afield, I am guilty of leaving it too long in between catch ups! Life moves at an alarming pace, and that’s why in 2014 we should all make a conscious effort to see our distant friends!

4. Have some YOU time! Do something that’s all for you! Whether it is going for a stroll in the park, or taking ten minutes out of your day to have a quiet cup of tea and a read of a good book. Find some time to be alone. I have found that since I started dedicating some time to be by myself, I am an altogether calmer more composed person. Give it a try in 2014!

Scleroderma News: Cover Story

6. Join a support group: Scleroderma can be an extremely lonely illness, but it doesn’t have to be. As supportive as friends and family can be, and with all the compassion in the world, no one truly empathises with your scleroderma journey like a fellow sufferer. In 2014, why not embrace the opportunity to make new friends through a Scleroderma support group? From pages on social media sites like Facebook (search for the Scleroderma Society) to specialist health based social networks (try inspire.com) there are people out there, just like you, willing to offer unprecedented support and advice, free of charge! You can also see page XXX to discover your nearest local group.

7. Get fit! So, the clock hasn’t finished chiming twelve and I’m already subscribed to my local gym, with the best intent at the forefront of my mind, but deep down knowing I’ll have cancelled it by February! Let’s make 2014 the exception. Exercise is particularly important for people with Scleroderma: Studies have found that people who are physically fit have increased assertiveness, better perception, and are able to make sound decisions. They are more confident in their ability to do things. Emotionally fit people are more ‘stable’ and less troubled by life's challenges and disappointments. People who are fit are more independent, have a better memory and more frequently

experience a positive mood. Needless to say, they also have a better body image and heightened feelings of well-being. In 2014 why not try a new exercise regime that suits you and your needs?

8. Help a charity! I will never forget my first fundraiser. The gratification I felt knowing that I had helped so many others, is a feeling that should be felt by all in 2014. Organising a fundraiser is not as daunting as it might seem. There are so many ways in which you can arrange to collect money for your chosen charity, from simple ‘whip rounds’ (we can provide collection boxes) to events such as walks, bike rides and marathons, sponsored beard shaves, leg waxes and hair growing, to quizzes, discos, auctions, raffles and fashion shows. The possibilities are endless. If you would like to support the Scleroderma Society, in ANY way, please email fundraising@sclerodermasociety.co.uk.

9. Speak your mind! Morrissey once sang: “Don't leave it all unsaid, somewhere in the wasteland of your head.” Embrace your ability to express yourself! If you feel passionate about something, anything, speak up! Why not offer feedback? Leave a comment on a post? Write a letter or keep a blog? Finally, and perhaps most importantly.:

10. Say YES more: There are so many reasons why we say no in life, so many reasons why we shouldn’t do things, and perhaps only one why we should – life is too short. 2014 is your year! Make it count! Love and best wishes,

Hollie Page 5

My Scleroderma Journey:

‘We all shine on, like the moon, and the stars, and the sun...’ John Lennon

America is home to an estimated 80,000 to 100,000 sufferers of Systemic Scleroderma. Sounds like a relatively large number huh? Not when you consider that 314 million people call it home. A reliable source informs me, that are less than 0.03% people in America suffering with Systemic forms of Scleroderma.

ferred to a specialist who diagnosed Systemic Diffused Sclerosis. Richard explained “this meant Scleroderma that was not localised. It affects multiple aspects of the body inside and out. Namely, tightening of the skin, contractures of the limbs, Raynauds, poor circulation, myositis (inflammation of muscles around internal organs) gut problems, and weakness etc.” Over the course of three years Richard visited his local hospital in Basildon, and London’s Royal free where he received a multitude of treatments. He said: “Cyclophosphamide helped, as did laxatives, but everything else, like steroids, immunosuppressors and antibiotics must simply manage sclero as I didn’t feel any improvement after taking them.”

It’s impossible to say how many people are battling Scleroderma globally. Perhaps all we can say with any certainty is that it is rare. Couple that with this: How many people does one meet in a lifetime? Studies have estimated the number to be an average of 10,000 people. What are the chances of one of those people being a sufferer of Scleroderma? The number is getting smaller right? Finally, consider this. What are the chances of meeting a fellow sufferer of Scleroderma, at home in Essex, in a completely, unrelated social setting? I didn’t believe in fate, until the day I met Richard Aransibia. It was the spring of 2011 when I was introduced to Richard through a mutual friend, who at the time didn’t comprehend that we were sufferers of the same illness. We were watching a wrestling match, when Richard casually commented that he was due a blood test the following day. I asked him w ha t it wa s fo r an d h e sa id ‘methotrexate’ - you could have knocked me over with a feather as I realised we were both having our blood monitored for the same reasons! I learned that when he wasn’t working as a Specialist at the Apple store, skateboarding, playing Frisbee (and as he put it “generally running about doing things I look a little too old to do,”) Richard, like myself, was a patient at The Royal Free Hospital in London. We were both under the care of Professor Christopher Denton. For years to come we would meet up during hospital stays and visits, to share a bottle of fizzy lime water and have a chat. Richard explained to me

Scleroderma News: Inspire Feature

that he first noticed that something wasn’t right when his knees became stiff when crouching. Speaking to me in the summer of 2013, he told me: “I thought nothing of it as I skateboard, but soon after I noticed swelling in my fingers at work. I'm a pretty healthy guy so I ignored it, thinking it would go away. The first time I knew something was really up was the gradual increase in fatigue when moving around. In hindsight, this was odd as my mobility and range of movement was still completely intact.” Richard went to his GP who quickly read the symptoms as Scleroderma due to the fact he had seen a woman with it before, over a decade prior! Richard was re-

Richard rapidly became a huge source of strength to me. He was never more than a text message away, even if I needed someone to confide in at 4am! It was during one of these late night heart-tohearts that I asked him what he thought his future looked like, to which he replied “Sclero is supposed to level out and start to revert. That’s what I am looking forward to.” Richard had tips to help me cope. One night he told me: “No matter how tired you get, don’t give up, push through the tiredness. Don’t rest in bed too much like I did. Stretch your limbs and fingers a lot. Have hot baths, wear gloves in cold weather even if it’s not THAT cold. Keep your chin up, even if things start to get difficult…” I remember his reminder that “you’re already fighting it so it won’t hit as hard.” Richard was famous for his (sometimes unusual) sense of humour; “Every conversation I have, somewhere in there, is Richard.” Said his friend, Tony Wells; “The jokes we make and the way in which we make them, at the very core of it all, is Richard. His comical nature was contagious and his timing of punch-lines was impecca-

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biggest difference, even though we get under each other's toes a lot, is my mum. She has been so helpful and I should be grateful for that. She must be as stressed as I am in a different way.” He said: “My friends and family are very supportive. Some of my friends are very active in the scleroderma community and that’s inspiring.” But he was also, himself, extremely encouraging of his own friends. Upon learning of my new role as Editor of Scleroderma News, Richard expressed an interest in sharing his personal story, in order to spread scleroderma awareness.

ble. He had the best sense of humour we have ever come across. If you were in a bad mood before seeing him, within minutes you'd be smiling from ear to ear and you'd forget why you were upset in the first place.” “Scleroderma is bloody *** isn’t it? If it was a person I would have definitely deleted them off Facebook,” Richard complained to me one day. I couldn’t help but smile. Richard had a way of making serious problems feel less intense. In 2013 Richard grew increasingly frustrated with Scleroderma as it began to limit his ability to drive his prized Audi RS5. He once confided in me that a lack of mobility prevented him getting to and from the vehicle. He said: “Fatigue stops

me driving far. Weight loss means I need a cushion. Contractures mean I am not as nimble on the wheel. This is quite frustrating, but when I can manage it, driving is a huge release for me.” I’ve never met someone as passionate about cars as Richard. In the summer of 2013 he arranged a surprise for his mum, Bernice, when he gave her BMW a makeover. Uploading the photographs to Facebook, he wrote: ‘Expecting just refurbished wheels, Mum is kinda shocked to see zenons, running boards, chrome grille, a roof aerial and pearl effect vinyl body wrap - And a Bluetooth hands-free kit & iPhone charger. Result.’ Richard valued the people around him, and once explained to me how his mum was his main source of strength, he said: “I guess the person who has made the

In October 2012, he once again showed me his support when he discharged himself from a hospital stay to attend a charity autograph auction that I had organised in aid of The Scleroderma Society. I was shocked and delighted to see him attend, and I will never forget his kind words of appreciation. Sadly, and unbeknown to so many, that was to be the last time I saw my friend. Richard died on the 30th October 2013, exactly one month after his 26 th birthday. His Mum, Bernice, was by his bedside at the Royal Free Hospital in London. Richard enjoyed reading and talking about science. He found it fascinating. , whether it was strange facts, astounding accomplishments or pondering the mysteries of the Universe. Tonight, if you happen to look up at the night sky, like Richard so often did, you may notice that there’s one more star watching over us.

“He used to call me Gambit and he was Wizard.” Laughs his friend Rikki Piercy: “I met Richard out skating. We couldn't have been much older than 15, he was so healthy and a great skate border. He was always so funny and his laugh was infectious! Everyone who knew or had met Richard always commented on how full of life he was and you could never say a bad thing about him. You could always find something in common with him. He would always beat me in a running race. He would always show me new music he thought I would like too. We would watch films on his big high definition TV and try to spot mistakes and silly things like that. He could take something terrible and turn it in to something comical. He was the greatest friend anyone could ask for!” Richard’s friend, Tony Wells, said: “There will never be another like him and for that we are eternally grateful. A truly remarkable human being with many good traits and few flaws. To say he influenced all of us is an understatement. We've never met anyone who loved life as much as he did, and we don't think Richard realized it himself. Music, fashion, cars, sport, and films - He enjoyed all of them. He loved all kinds of food and constantly immersed himself in the ever evolving world of technology. Thinking back, it's hard to find anything he didn't have an interest in. We've barely begun to scratch the surface of this incredible person, how much he meant to us, and how hollow life will be without him here to share it. He'll be in our hearts through the good times and the bad, and that out of the 107.6 billion people to have lived, we couldn't have picked a better man to have as our best friend.”

Do you have a story to tell? Do you want to share it with others? Email: holllie@sclerodermasociety.co.uk

Scleroderma News: Inspire Feature

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Fundraising Stars: Prudential Ride London 100 Start 2014 in style and snap up one of our 13 places for this perfect ride! Follow in the footsteps of our 2013 riders Peter Marsh, Amy McCallin and Martin Billman who raised a whopping £2636.99! The Prudential Ride London 100 follows a route made famous by the world’s best cyclists at the London 2012 Olympics. Start in Queen Eliza-

beth Olympic Park, then follow a 100 mile route on closed roads through the capital and into Surrey’s stunning countryside, finishing at The Mall in central London. This is a truly spectacular event to be involved in. In the next issue we will read about Peter Marsh’s (right) experience of the ride.

Thank You...

Hair Today, Gone Tomorrow

Since our last newsletter in November our members and supporters have been supporting us through a variety of events. An extra special thank you to:

“I am close to finishing a whole year without having a shave or a haircut all in aid of raising funds for the Scleroderma Society. My mother Wendy was diagnosed with the disease several years ago and, along with various other members of my family and friends was completely unaware that such a condition existed, so taking part in this fund raiser was also to raise awareness. You may not know mum personally but she is

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Paul Robins and team who held a Golf Day in Dubai raising a huge £6,900.

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Natalie for throwing herself out of a plane in the name of charity.

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Becky and colleagues for fundraising through a book sale and office collection.

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De Ruddick and the Ladies at Workington Golf Club for raising £ 785.

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Claire Erte for running the Cardiff Half Marathon and raising over £1000.

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(Right) Ian Drury and team for hosting their annual Brian Norris Charity Dinner.

the heart of our family, and has us all round twice a week to cook us a family meal (usually about 12 of us!!!) She would do anything for anyone and always puts others before herself.” Paul plans to shave at a New Year’s Eve party where further money will be raised via raffles and games. Please help Paul to raise as much as possible: www.justgiving.com/ Paul-Le-Grave,

If you are fundraising on our behalf then please let us know so we can assist and credit you for supporting our vital work: fundraising@sclerodermasociety.co.uk or call us on: 020 7000 1925

Scleroderma News: Fundraising

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Celebrating Fundraising Success “Hi readers. My name is Becky Pearson and I am a Work Experience Officer at Bradford Metropolitan District Council. I am also a member of the Education, Employment & Enterprise Activity Hub. In 2013, 4 colleagues and I formed an Activity Hub for our overall team. On a monthly basis we get together to arrange team activities and look at ideas where we can raise money for various charities. We try to do a team building fundraiser every term. Earlier this year our colleague Janet Knowles and her family were going through a terrible time with her sister Dianne’s illness. Sadly Dianne lost her life to Scleroderma. Janet’s family arranged a number of fund raising events including The Three Peaks Challenge and I asked Janet if there was anything that we could do to help raise some more funds for the charity and if we could do our next fundraising day in memory of Dianne. We planned a date after the summer school holidays and as it fell around Halloween we decided to give it a Halloween theme so we could dress up. I contacted Susie at the Scleroderma Society to inform her that we would be raising money and also to see if she would be able to send me logos

for us to use for our poster that we were designing. Susie was a great help and it was lovely that she knew from the basic information I had put in my email who we were raising money for and how the family had already raised money doing the three peaks challenge. Susie arranged sending merchandise for us to use to raise awareness including pens, pin badges and wrist bands which was so generous. We asked for people to donate cakes so we could sell them across the 5 floors in our building. Vicky, who is also a member of the activity hub arranged for her partner to put a Halloween Quiz together to continue the theme. We had also arranged for the Book People to come into our extension area at the end of September to sell books and 10% of the sales was donated to a charity of

our choice so on this occasion it was the Scleroderma Society. October 25th arrived and several of us came in fancy dress. We had loads of cakes donated by members of our team and also Janet’s family. At 10am, dressed at witches, cats, wizards and devils we tackled a couple of floors between us selling cakes, badges and wrist bands and raising the awareness of the charity. We even had an 18 month old witch selling cakes with us! A few others went round selling quiz sheets and giving pens with these and the quiz proved quite popular. We announced a winner at 1pm with 18/20 and they won a tin of chocolates that had been kindly donated. It was amazing when we started to count up the money people had generously donated and we were so shocked when we got the final figure of £517.33 as this beats any amount we have raised within our departments in the past year. I think when people are raising money for a charity that touches someone’s heart and has affected their family directly, people are definitely more generous and it’s great that we have been able to raise some more awareness for the Scleroderma Society.”

Stamp Collecting Pulls in Pounds

Going Dry for Scleroderma

Jason Burgh has once again taken on a challenge on behalf of the Scleroderma Society, but this time it involves stamps. Jason has been collecting stamps within his local community and has gained huge support with his current total reaching 8,500 stamps. Jason’s collection has not only raised awareness of scleroderma and the society but will bring in much needed funds. Thank you Jason.

We all like a nice glass of wine or something stronger on a Friday but Chris Jones has gone dry this January. He is getting sponsored to abstain from alcohol for the whole month. Chris’s total has reached £250 but he has since pledged that if he reaches £500 he won’t touch a single drop in February either. Help to keep Chris dry: https:// www.justgiving.com/Chris-Jones91

If you would like to see your event covered in Scleroderma News, please email Hollie, hollie@sclerodermasociety.co.uk

Scleroderma News: Fundraising

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Meet our Heroes: The London Marathon 2014 Lianne Robertson and Jamie Forman “Jamie and I are taking on this challenge together and are really looking forward to it. I’m an actor and events manager and Jamie works as a maintenance technician/Janitor in a public school. We live in Glasgow and moved here together after meeting in our hometown of Fraserburgh in the far north east of Scotland. I ran the London Marathon in 2011 and since then Jamie has also taken a keen interest in running. I have always told Jamie he must run the London Marathon at some point in life. Over the last few years Jamie has done a few half marathons but this will be his first marathon. We chose Scleroderma as we had a family member who suffered from an aggressive form and unfortunately lost her battle with it. We hope that our funds can go towards more research to find better treatments and even a cure.” Support Lianne and Jamie to reach their target: uk.virginmoneygiving.com/LianneRobertson

Nicola Bowerman “I live in Bedfordshire with my husband Nick and my two children, Thomas, aged 8 and Sophie aged 6. I never used to enjoy running. I think my dislike goes back to school P.E lessons where we were made to run cross country in the freezing cold! However in 2012 I set myself a New Year’s resolution to do something I struggled with and decided to take up running. I joined a local running club as I knew I would struggle to do this on my own and I have never looked back. I was totally surprised to find out how much I absolutely love running and really wished I had started running earlier. I was fortunate enough to gain a ballot place this year for the London Marathon and I knew straight away I wanted to run in memory of my beloved dad (Bill Storey) for the Scleroderma Society. My dad was diagnosed in August 1998 with a very aggressive form of scleroderma and was only given 3 months to live. Dame Black and Professor Denton gave my dad an opportunity to be part of a clinical trial and receive a stem cell transplant. His condition improved and he was on top of his illness but unfortunately 7 years later he developed pulmonary hypertension and died in December 2004. My dad was a wonderful man and I feel absolutely privileged to call him my dad. He would be absolutely thrilled that I am raising money for the society and giving something back for all the help and support they gave him and my family. As everyone knows scleroderma is very rare, so I was completely shocked when one of my closest friends was diagnosed with the disease last year. I am also running and raising funds for Katie Knight. I will cross that finish line with the memory of my dad and celebrate with some bubbly with Katie!” If you would like to sponsor me, my just giving website is www.justgiving.com/Nicola-Bowerman2

Gareth Clifton “Since completing the London Marathon in 2011, I have secretly always wanted to do it again and I was fortunate to be offered a place. I will be drawing on all my experiences of previous marathons. This is a charity which is close to my heart especially as my mum suffers from the condition. Having run for the charity previously and raised funds, I wanted to do it again. I want to raise awareness and much needed donations to help the future treatment.” Support Gareth on his London Marathon journey: www.justgiving.com/run-GC-run

Scleroderma News: Fundraising

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Fancy Getting Involved? Want to make a positive change in 2014? There are plenty of ways you can help The Scleroderma Society: Innovation Board The Innovation Board will discuss ideas and ways in order to continue development of the society. We will have meetings both in person and via online sources so even if you aren’t able to travel please do get in touch if this sounds like an opportunity you would like to be a part of. You don’t have to be a radical thinker to be on this board. We are looking for individuals who wish to see the society move forward and progress and want to be a part of that.

Newsletter Packing We are looking for volunteers who can help us four times a year to package up our newsletters to be sent out to our members. If you are able to spare a day every three months or just one day throughout the year then we would love to have you on our team.

Live near London? Love to make noise? Well this is perfect for you! We are looking for volunteers to come down and join us at the London Marathon on 13th April 2014 to cheer on our runners! This year we have nine fundraisers running and would love to give them as much support as possible. If you would like to support our fundraisers but don’t love to make noise then we would love volunteers to hand out goodie bags on our stall at the finish line and raise awareness for the society.

Refer a Friend for 2014 Included in this copy of Scleroderma News is a ‘Join Us’ form. Why not pass this form to a friend, and encourage them to join the Scleroderma Society? It’s only £5 a year and in return we’ll send 4 copies of Scleroderma News!

Hi readers! Hollie here! I’m recruiting researchers, writers, bloggers, photographers, illustrators, graphic designers and more to get involved in producing Scleroderma News! Experience or no experience, if you have an interest in print media and would like to get your work published please get in touch! I’d love to hear from you! Email hollie@sclerodermasociety.co.uk

Buddy/Befriender Would you like a scleroderma buddy? Someone you can phone or have a cup of tea with or even someone to help you with your shopping. If you would like to develop a friendship like this then please get in touch so we can find a buddy for you. Become a buddy! We are always looking for individuals who are happy to be added to our database as a buddy. When another individual seeks a buddy in your area we will get in touch with you and support you in your role.

If you are interested in any of our volunteer opportunities please contact Amy Baker: amybaker@ sclerodermasociety.co.uk or call 020 7000 1925 for a chat… Fundraiser Stories Online: We would love to feature all our fundraisers in our newsletter but unfortunately there just isn’t enough space as we have so many wonderful people fundraising for us. So you can now read about our fundraisers on our website under Fundraiser Stories. Every time you receive a newsletter from us our Fundraiser Stories will be updated so you can see our most current fundraisers.

Could Your Employer Help Fight Scleroderma? Every year we are looking to increase awareness and raise even more money to fund our vital work. Could your work help us this year? Nominate us for charity of the year or hold a fundraiser within your work place to help raise awareness and funds. If you would like to know more about how your workplace can support us email: fundraising@sclerodermasociety.co.uk

Scleroderma News: Fundraising

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Top Tips: Help is at Hand! Trustee Helena Rozga shares her top tips for coping with Raynaud’s! Left: Helena’s red hot tip! Always carry hand warmers! The Hot Rox is rechargeable, Helena got hers from Amazon: www.amazon.co.uk/hotrox+hand+warmers, but you can also find them elsewhere on the internet, including at www.the hotrox.co.uk. If you have a Costco near you then they are the cheapest place to pick up Little Hotties, costing around £11 for 40 pairs!

“Does limited hand functionality and Raynaud’s make it difficult for you to take your cards from your wallet or purse? My hot tip is punch a whole in the cards away from the magnetic strip or chip/signature area in one corner and put them on a key ring! It’s easy for you to single out the card you want and pass the key fob to the sales assistant so they can be scanned while still on the ring! Sales assistants smile and tell me it’s “very clever” of course they don’t know it’s to stop the embarrassment of my fumbling around in my wallet!” - Helena Rozga

Below: Hot tip ! These little purses make it easy to find your change especially if your hands are not working properly! - Helena

Scleroderma News: Top Tips

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Reader’s Top Tips for improving your Scleroderma Life! “I recommend pain management, try reading or Googling “Spoon Theory.” Kim Tatterfield

“A warm fuzzy robe. If I keep my core very warm, my hands and feet don't have Raynaud's attacks as often or as bad. Stocking hats help a lot too. I may look silly but I am saving my fingers and toes!” Polly Lay

“I find it helps to put a fleece blanket in the dryer, rolling up in it will stop a Raynauds attack immediately.” - Linda Ferri

“For an inexpensive quick fix, cut the top bands off old socks, cut a small hole about 1/2 down from the top (for the thumb to go through) and you can wear as a hand/ wrist warmer. You can hem or use stitch glue to keep ends from raveling depending on the material.” - Elie Salas

“I use Little Hotties Hand warmers and toe warmers. I also wear thermals under my clothes.” - Teresa LeBleu Rowland “I refuse to be beaten by stairs, and use this 'mountaineering' session as my way of creaking the body back into some sort of action in the morning” - Sandra Branch –Burbridge “We are what we think! I change my sad thoughts to happy thoughts and it does make a difference in my attitude and everybody around me. It is not easy to do when our bodies are in pain and suffering but if we can make ourselves laugh, it does work miracles on our attitudes.” - Ann Havelock

“I try to walk on the treadmill at least 10 minutes a day, especially if the weather is too cold to go out to walk.” – Michele Huntington

“I have just bought a down duvet, UGGs are a must, as are sheep skin mittens, why not try an electric under blanket too?” – Liz Fitzpatrick Leadbetter

“Mittens not gloves, and always carry the instant heat packs.” - Diane Begley

“I work out on my ab-doer twist, it gives me energy and stamina. Music also gets me moving!” - Margaret Cole

“I love my heat lamp in my bathroom. I can get out of a warm shower and stay warm, which helps me so much... I make sure my clothes have been in the dryer and start the day warm, then it's easier for me to stay warm. Hot hands and feet warmers. Mittens work better than gloves for me... and good boots!” - Krystal Hovater

“I have 3 mischievous male dogs that keep me alert and force me to go outside to see what they're up to. I am the alpha to my pack, and when I step outside they are 'pretend' biting into the air at each other's faces. Because my hands hurt they know that when I put on my leather garden gloves, Mommy is going to play with them!” - Maria Saenz Leija

“Do something for other people! I find if I set a goal of doing something for someone else it takes away from the bad of Scleroderma and I am able to then make it through a day DOING instead of letting it keep me down and out.” - Karen Cyrus

“I always make a list of things I need to do (brain fog) and mark things in their priority. Anything not urgent can wait to be tackled on a good or better day.” – Caroline Adams

DO YOU HAVE A TOP TIP YOU WOULD LIKE TO SHARE? Share your top tips with readers of Scleroderma News and lets all help each other! Email: HOLLIE@SCLERODERMASOCIETY.CO.UK

Scleroderma News: Reader’s Top Tips

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Fixed or Flexible? LA Stone My name is Georgia Davis and I have been a fully qualified beauty therapist since 1990. It was during a placement in Switzerland that I was shown and used LaStone Hot & Cold stone massages. This highly effective way of massaging was so successful with the skiers tired legs and bodies, removing their lactic acid and preventing the onset of muscle soreness.

By Helena Rozga “I have always tried to keep moving throughout the various traumatic stages of Scleroderma, ranging from crawling up the stairs on all fours to now doing Pilates and swimming. I have always been determined not to let Scleroderma get the better of me and as you all know this is sometimes really difficult. The things I have done to maintain circulation and flexibility have varied along with the degree of involvement and pain.:

I offer my clients a variety of treatments, delivering a deeply penetrating massage which effects chemical, physical and spiritual healing whilst bringing balance to mind, body and soul. My first introduction to Scleroderma was though treating Helena. After a full health assessment I was able to tailor make a treatment plan of varying temperatures to enable Helena's body to heal and re-energise itself with out heavy or deep massage movements. LaStone is a Geo-Thermal treatment, where the circulatory system is stimulated by using hot and cold stones to enable the body to do the work from the inside. The hot Basalt stones are safely heated in a controlled temperature unit whilst the cold marble stones are placed on ice. Learning about Scleroderma and the effects temperature can have on the body especially if you’re also dealing with Raynaud's, I always keep the hands and feet cocooned in warmth whilst using the cold prescriptively on areas where there is extra tension and stubborn aches and pains. I also offer a alternative LaStone treatment called CastleBuilding. Using the stones to wrap up and cocoon the body in an non- invasive therapy with the client still fully clothed. This is excellent for tension, stress and anxiety which is often overlooked in today's world.

First off, I have always tried to massage my hands and feet. As soon as I could tolerate body contact, I found a lovely lady, Gill, at Bodykind, who did the most wonderful aromatherapy body massage and reflexology. This was really beneficial along with the wax baths and exercises for my hands. I have progressed now to LA stone massage, which eased my aches and pains and helped to repair my troublesome shoulder. I have asked Georgia, my therapist to explain the LA stone technique to you. Even when in hospital, I was able to continue with the massage through the wonderful Keith Hunt and team of volunteers at the Royal Free. When I was in Miami before my illness, I was in an hotel with a roof top swimming pool. I thought it quite

Scleroderma News: Reader’s Top Tips

bizarre to see people and particularly ladies in full make up drinking cocktails in the pool and chatting. When they were not drinking, they were power striding up and down the length of the pool. Obviously proper swimming was uncool! I remembered this years later and my second venture was to join a local pool. I just walked up and down, hardly a power walk but nonetheless the water was supporting my movement and I was able to exercise. I had to deal with the Raynaud’s difficulties but it worked for me. Eventually I was able to learn to swim again which took time and discomfort as my limbs were so constricted but I am sure I am now in a much better place because of it. My posture and balance was affected by the Scleroderma and friends kept telling me to try Pilates but I was afraid and embarrassed as I couldn’t get down on the floor and my hands do not flatten. I am sure you recognise the difficulties here without me writing about it. So my third venture was to find Claire, a professional Pilate’s teacher and amazingly I have experienced all the benefits of Stott Pilates, which I have asked Claire to tell you about (on the next page.) Friends tell me my posture is more aligned and I am much more flexible. Personally, if you give Pilates a go, dependant on your level of stamina and flexibility, it is better to start with one to one tuition. Most places do a free introductory session to explain the basics and to see if it is for you.”

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Top Tips to Keep Moving: Pilates By Clair Cornish, Manager of Prime Pilates in Rayleigh, Essex.

People always ask what results they should expect. Pilates will increase your strength, flexibility, mobility, balance and body awareness as well as decreasing back pain and other general aches and pains.

“I was first introduced to Pilates after I sustained a knee injury while training to become a professional dancer. I was advised to undertake a course of Pilates as part of a rehabilitation programme, after undergoing knee surgery which then allowed me to complete my training and professional dance career. After seeing such great results through my own experience and with my dance career coming to an end I decided to train and become a fully certified STOTT PILATES instructor. I have worked with a diverse range of clients and have helped them achieve fantastic results: for example those with injuries, postural problems, multiple sclerosis, pre and post natal clients and after meeting Helena, Scleroderma. The STOTT PILATES method is a contemporary approach to the original exercise method pioneered by the late Joseph Pilates. Co founders Moira and Lindsay Merrithew, along with a team of physical therapists, sports medicine and fitness professionals have come together to refine the STOTT PILATES method of exercise, making it one of the safest and effective method available. It is used by rehab and prenatal clients, athletes, celebrities and everyone in between.

Stott Pilates can be done on both equipment and on a mat. Most of the - exercises are floor work, sometimes using small equipment such as balls, fitness circles, roam rollers, flex bands and pillows.

Pilates is low impact exercise that is designed to restore the neutral curves of the spine and rebalance the muscles around the joints. Exercises can be modified to cater to many different body types and abilities making it applicable to everyday life. The benefits of Pilates:  Increased strength without unwanted bulk  Increased core strength, stability and mobility  Improved posture and fitness levels which may help prevent injury  Greater ease of movement  Heightened body awareness  Low impact on the joints  Enhanced balance, coordination and circulation  Improved athletic performance

Pilates equipment is different. There are several different pieces of equipment that might be used in a lesson. Some of the equipment uses spring tension which doesn't always make exercises harder as you would think but actually helps you to isolate certain muscles. Equipment found in a Pilates studio: 

The reformer



Cadillac



Stability chair



Arc barrel



Spine corrector



Leader barrel

Regardless of age or fitness level, Pilates is an ideal complement to any cardiovascular exercise, athletic training or rehabilitation.

If you are a beginner it may be best to start off with a one to one session and to always train with a qualified instructor to ensure that you are doing the movements correctly. An experienced instructor will be able to modify the exercises to accommodate your limitations, continually challenging your range and monitoring your improvement.

Scleroderma News: Top Tips

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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. He also has a major research programme that spans both clinical and laboratory trials related to scleroderma. I have Raynaud's and scleroderma and have been on the same medication for some time. Recently, I have developed very painful mouth ulcers and wonder if there is a connection? I have reread all the patient information leaflets but I can't find any reference to mouth ulcers. Mouth ulcers are common but can occur as a side effect of some medications given for scleroderma such as methotrexate (and other agents). I would recommend discussing this with your doctor - you may need a blood test. Sometimes mouth ulcers due to methotrexate can be reduced by taking folic acid supplements. However mouth ulcers can occur for other reasons or as part of an underlying connective tissue disease. My tongue swells up and goes blue at times and I find it difficult to talk. It feels like my tongue is shrinking. Can Raynaud's affect the tongue? It is certainly possible for the tongue to be affected and this seems to occur in both primary Raynaud’s or in association with connective tissue disease. Blood vessel spasm in Raynaud’s can involve any of the vessels that respond to or regulate temperature and this includes the tongue (it is an important cooling device in dogs!) Raynaud's therapies may improve these symptoms. The tops of my hands are very itchy and get tiny hard spots, which are not visible but I can feel them, also the tops of my feet, my big toe and around my ankles are itchy too - no

spots but sometimes it looks like I have a nettle rash on the top of my toe and on the backs of my wrists. The itching is always on both sides at the same time. Any ideas please? This symptom sounds like urticaria, which is the result of release of histamine and other factors in the skin - it can be provoked by temperature change, scratching or sometimes in association with a poor circulation. It can be helped by anti-histamine creams or tablets (although these may cause drowsiness). Some connective tissue diseases are associated with uticaria and so if this is a severe and persistent problem you should consult your doctor as specialist dermatology or rheumatology referral might be appropriate. I have read that one should have an ANA (anti nuclear antibody) blood test if Raynaud’s becomes severe or if you develop Raynaud’s after the age of 40. If this comes back positive does it always that you have scleroderma or can you have positive ANA and not develop scleroderma? Most patients with Raynaud’s phenomenon (RP) have “primary RP” that is not associated with any underlying disease, some patients do develop a related condition such as scleroderma or another rheumatic or connective tissue disease (secondary RP) some cases of RP have positive ANA and this is associated with increased chance of developing an associated disease over subsequent years, but many patients do not develop scleroderma. Research studies suggest only about 10% of such cases progress to scleroderma.

I have just undergone my first course of Iloprost and wonder how long it takes before it kicks in? lloprost is a synthetic form of the natural substance prostacyclin that opens up blood vessels and improves circulation. There may be some immediate benefit from Iloprost during infusion but the maximum effect seems to occur around 6 weeks after treatment is complete. This is likely to reflect the beneficial effect on blood vessels and their lining cells (the endothelium). I saw a Rheumatologist recently about my possible Raynaud’s, dry eyes, and dry mouth. I have difficulty in swallowing. He has referred me to a Gastroenterologist and an ENT specialist about my swallowing problems. He has also suggested to my GP that he should put me on drug called Thymoxamine for my peripheral circulation. Is this a common medication for Raynaud’s? Thymoxamine is one of a number of drugs that can reduce blood vessel spasm. It was originally developed for high blood pressure and is a class of drugs called “alpha adrenergic blockers” that block some of the effects of adrenaline. It is sometimes used in Raynaud’s although other agents such as Nifedipine or losartan are also prescribed. It is often necessary to try several different medications to find one that works and does not cause significant side –effects. Many of the common side effects relate to lowering of blood pressure.

This article has been produced in association with The Raynaud’s & Scleroderma Association. Scleroderma News: Scientific & Medical

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Gloves On Please! This February the Scleroderma Society are getting their gloves on in support of the RSA Raynaud’s awareness month This is the story of Maurice Raynaud - the man who put the ‘ R’ in CREST

‘cold’ episodes were accompanied by pain and great discomfort.

As someone who has scleroderma, or someone who knows a person with scleroderma, you’ll be aware that nearly all those with systemic sclerosis can have Raynaud’s. Sometimes the symptoms of Raynaud’s can pre-date the diagnosis of scleroderma by some years. When the onset of Raynaud’s is swift and severe – particularly but not exclusively in women in their 30s or 40s – it is worth further investigation by a rheumatologist. Where it is found to be associated with an autoimmune disease – particularly scleroderma – the Raynaud’s is said to be ‘secondary’. Where no rheumatic autoimmune disease is detected, it is generally ‘primary’ Raynaud’s – something which up to 10 million people are estimated to have in the UK alone.

The doctor who attended her was a young man called Maurice Raynaud. He was perplexed at the situation – faced with a patient who had spontaneously developed gangrene of her fingers with no apparent cause. The young woman appeared healthy, with a good pulse in her wrists that suggested a normal supply of blood to her hands, yet her fingers looked starved of blood and the tips of her fingers had become gangrenous. Maurice Raynaud’s 19th century medical teaching told him that such gangrene was due to either blockage of a main artery in a limb, diabetes, typhoid, or poisoning by a fungus associated with mouldy rye. None of these were relevant to his patient and her medical history showed that colour changes in her digits seemed associated only with cold temperatures and stress. He deduced that the colour changes were due to some sort of intermittent blockage of the blood supply and that the spontaneous gangrene of her fingertips was in some way connected.

Maurice Raynaud is said to have ‘discovered’ the medical condition that bears his name, although the issue which has and continues to face thousands of people – affecting blood flow to the body’s extremities – has existed throughout history. Raynaud's is today called a ‘phenomenon’ rather than ‘disease’ as it was in the 19th century and is named after Dr Maurice Raynaud who documented the symptoms for modern medicine. The son of a university professor, August Gabriel Maurice Raynaud was born in 1834 and started his medical studies at the University of Paris helped by his uncle, Vernois, a well known Paris physician. He obtained his medical doctorate in 1862 and a PhD in 1863 and although he held privileges working in various Paris hospitals, he was never appointed to a senior position. The story has it that in the late 1850s, the presentation of a 27 year old woman posed a conundrum to the medics of the day. The fingers of her hands repeatedly became pale and cold. Over the next few weeks the tips of some of her fingers became black and shriveled and these

Over the next few years Raynaud saw patients with similar symptoms and shared his observations with colleagues. Subsequently he recorded 25 patients whose fingers, toes, or sometimes the face and ears changed colour in the cold in a similar manner, whilst some also developed areas of gangrene on the affected parts. Raynaud was baffled by the cause of the phenomenon whose symptoms he’d recorded which included colour changes of the extremities and the appearance of ‘flat’ nails. A breakthrough came when Raynaud made a connection with the work his contemporary, Claude Bernard, was undertaking. Famous for his empirical approach to medicine, Bernard’s work included experimentation on the body’s blood flow. He had discovered that arteries - the vessels carrying bright red blood all around the body - are supplied by

Scleroderma News: Scientific & Medical

nerves, which, when activated, cause the arteries to constrict and hence carry less blood. The nerves in question were called the sympathetic nerves. Here at last was Raynaud's answer! Raynaud believed that these ‘sympathetic nerves’ must be overactive, making the arteries so narrow that not enough blood reached the extremities to keep them alive. When the condition is severe enough gangrene develops but in its milder form the affected areas intermittently turn white or blue and finally red when the blood eventually returns. In essence, the fingers and anywhere else affected were being strangled or asphyxiated by a lack of blood! Raynaud published his thoughts in the form of a thesis in 1862 called, "De I'asphyxie locale et de la gangrene syrnetrique des extremites" translated as "On Local Asphyxia and Symmetrical Gangrene of the Extremities". Maurice Raynaud died at the age of only 47 in 1881 of a heart attack, having suffered from cardiac disease in the preceding years. He had become respected and recognised as an excellent teacher, clinician, researcher and writer. When Raynaud discovered the condition that would later carry his name, prevention and treatment was little understood. However, the one recommendation that is still relevant today is that patients should try to stay warm and avoid consuming anything that might constrict their blood vessels. Today, so much more is now known about Raynaud’s than in the 19th century – it’s association with scleroderma and how to manage moderate and severe cases. Yet, awareness of its significance beyond ‘ that cold weather condition’ is still something the general population and some clinicians need to consider seriously taking heed of the severity of symptoms and investigating potential underlying causes.

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ACR-EULAR NEWS: Classification Criteria for Systemic Sclerosis By Frank van den Hoogen & Jaap Fransen Systemic sclerosis can be recognized by an expert rather easily when the disease is fully developed. But the course of the disease can be different between patients, and symptoms may vary significantly especially in the beginning of the disease. This makes it sometimes difficult to establish a diagnosis of systemic sclerosis and it often depends on the expertise of the physician. The cause of systemic sclerosis is still unknown, and there still is no therapy that can cure the disease. Therefore research is needed and to perform research the participation of patients is mandatory. In order to secure that in studies of systemic sclerosis all included patients indeed have systemic sclerosis, we need classification criteria. Classification criteria are not the same as diagnostic criteria, but they should be very close to the way physicians diagnose systemic sclerosis in daily practice. To successfully apply results from studies to patients in practice, it is of course most relevant that patients in studies resemble patients in practice. In 1980, the American College of Rheumatology developed criteria for systemic sclerosis, the so called â&#x20AC;&#x153;preliminary ACR-criteria for the classification of systemic sclerosisâ&#x20AC;?. At that time, not much was known about autoantibodies that are associated with systemic sclerosis, and we did not know about the significance of nailfold capillary changes. As a consequence, autoantibodies and nailfold capillary changes were not included in the preliminary ACR-classification criteria. Moreover, mostly patients with definite and diffuse cutaneous disease were included in the develop-

ment of these criteria. Later, it appeared that many patients with a diagnosis of early or limited cutaneous disease were not classified as systemic sclerosis and could not be included in studies. So it was time to develop new classification criteria. The European League against Rheumatism (EULAR) and the American College of Rheumatology (ACR) assigned a task force with the main goal to develop new classification criteria for systemic sclerosis that would perform better than the preliminary ACR criteria. The task force consisted of 4 Europeans (Frank van den Hoogen, Jaap Fransen, Alan Tyndall, Marco MatucciCerenic), and 4 Northern Americans (Janet Pope, Dinesh Khanna, Sindhu Johnson, Murray Baron). The task force started in 2008. First we asked physicians who treat many patients with systemic sclerosis which symptoms or features they thought could be attributed to this disease. The results was an extensive list of 168 features, varying form arthralgias and fatigue to thickened skin, digital ulcers and autoantibodies. Next we started to reduce the number of features by having experts rating their appropriateness for classifying systemic sclerosis. The features and their combination was tested with an expert panel. We examined in a specially collected database with scleroderma patients and scleroderma-like patients what would happen if we omitted one feature and how the features performed. All this was done with the help of many scle-

Scleroderma News: Scientific & Medical

roderma experts from Europe and Northern America. We finally succeeded to develop classification criteria that perform better than the 1980 preliminary ACR criteria. The new ACR-EULAR classification criteria are shown in the table (shown across page) as well as to whom the classification criteria should be applied and to whom they should not be applied. It is of importance to know, that patients who fulfill the classification criteria almost always will have systemic sclerosis, but that patients who not fulfill these criteria still may have systemic sclerosis. The main reason is that not all symptoms ascribed to systemic sclerosis, could be included in the classification criteria. The expertise of the physician will remain necessary in these cases to establish a diagnosis. READ MORE:: ACR: www.rheumatology.org EULAR: www.eular.org

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ACR - EULAR SSc classification criteria Item

Sub-items

Weight/score

Skin thickening of the fingers of both hands extending proximal to MCP joints (sufficient criterion)

Skin thickening of the fingers (only count the higher score)

Puffy fingers

Sclerodactyly of the fingers (distal to the MCP joints, proximal to the PIP joints

Fingertip lesions (only count the higher score)

Digital tip ulcer

Fingertip pitting scar

Telangiectasia

Abnormal nailfold capillaries

Pulmonary arterial hypertension and/or interstitial lungdisease

Raynaudâ&#x20AC;&#x2122;s phenomenon

SSc-related auto-antibodies (anticentromere, anti-topoisomerase I, anti-RNA polymerase III)

Add to maximum weight in each category to calculate the total score Patients having a total score of 9 or more are being classified as having definitive systemic sclerosis

Hand Problems in Patients with Scleroderma By Mike Hughes, Clinical Research Fellow, University of Manchester and Salford Royal NHS Foundation Trust. The hand is truly an incredible mechanical and engineering wonder to behold. Indeed, the intricacies of the hand are what separate us from most other animals and have allowed the human race to make such incredible achievements. Patients with scleroderma often have limitations in their hand function, for example brushing their hair or opening a jar, and this may have a significant impact on quality of life. Hand problems in patients with scleroderma may be due to a number of causes that I will now discuss. Digital (finger and toe) ulcers are common in patients with scleroderma; indeed a recent study found that 10% of patients at any one time have at least one finger ulcer. Digital ulcers are found on the fingertips and also over the back of the hands, are often painful and not uncommonly become infected. The end result is that such

ulcers can have a big impact on how patients are able to use their hands. Thinking about blood flow further (as we believe that ulcers are largely caused by lack of blood flow); severe Raynaud's attacks, as readers may well know, can be very painful and disabling when they occur. The skin thickening found in scleroderma may lead to another problem with the hand: tightening with 'contractures' of the fingers, leading to clawing of the fingers, and inability to completely make a fist or stretch out the fingers. Less commonly, we increasingly recognise that a number of patients with scleroderma also have a type of 'inflammatory' arthritis, that is, the joints themselves are actually inflamed or swollen, as opposed to wear and tear arthritis (osteoarthritis). It is important to recognise the difference, as there are effective treatments for such a type of arthritis. Calcinosis (lumps of calcium containing deposits beneath the skin) represent yet another possible hand problem in patients with scleroderma:

Scleroderma News: Scientific & Medical

they can be very painful, and can interfere with hand function. Sometimes calcinotic lumps ulcerate through skin and there is then a danger that the area becomes infected. I cannot emphasise enough how important it is that patients with scleroderma are managed by a dedicated 'multi-disciplinary team', that is a group of health care professionals (doctors, specialist nurses, occupational therapists, physiotherapists and podiatrists to name but a few!) who are familiar with the specific issues relating to scleroderma. As the old saying goes, â&#x20AC;&#x153;if in doubt it is always best to get things checked out". For example, if you are concerned that a digital ulcer may be infected, then you should seek medical advice as soon as possible. It is a great source of encouragement that different researchers around the world are looking at different aspects of hands problems with patients with scleroderma, such as digital ulcers and also contractures of the fingers.

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Researchers See the Light Researchers at Salford Royal NHS Foundation Trust have tested a new way to treat a disfiguring skin condition. Telangiectatases are knot-like clusters of blood vessels on the skin which can occur in 30 to 50 per cent of patients with systemic sclerosis, a potentially serious and incurable auto-immune condition that affects connective tissue. Telangiectases tend to occur on the face, neck and upper limbs and can cause psychological issues for patients.

versity of Manchester, said: “While this was only a small-scale pilot study, it does suggest the potential for an alternative, less painful, treatment for Telangiectases. We will continue to

do all we can to find new and better treatments for patients with systemic sclerosis, which is a very serious and debilitating condition.”

Currently, doctors use laser treatment to blast the Telangiectases and destroy them but this treatment can be painful at the time and result in bruising afterwards so researchers have been looking for an alternative. Salford Royal is one of only a handful of Trusts in the UK specialising in systemic sclerosis, also known as scleroderma, and Consultant Rheumatologist Ariane Herrick, also Professor of Rheumatology at The University of Manchester, is a leading UK expert in the condition. As part of the Trust’s and University’s wide range of studies to improve care of scleroderma patients, researchers tested using intense pulsed light (IPL) instead of laser treatment. IPL is often used cosmetically for treating birthmarks and for hair removal. Their pilot study treated 19 patients with Telangiectases, using IPL on one side of the face and laser treatment on the other. They had three treatments over the course of eight weeks before the results were analysed using close-up photographs and specialist imaging. The research showed that the effects were roughly comparable but IPL had fewer side effects. Salford Royal Rheumatology researcher Dr Graham Dinsdale, who is also a Research Associate at The Uni-

What is Telangiectasia? Denise, a blogger from Michigan USA, explains: “Telangiectasia (Pictured above) are capillaries that have became dilated or enlarged which makes them visible on the surface of the skin. Their appearance can vary from large pronounced red dots to very small dots. More of a spidery broken vessel look may be what some experience. The specific reason this happens is not yet known but scleroderma specialists view this as another aspect of vascular damage caused by scleroderma. The spots when pressed will disappear only to reappear once the pressure is released. They are flat and smooth on the skin with no evidence of a raised spot or rash. Telangiectasia is the T in the acronym of CREST Syndrome. However, people with diffuse scleroderma can also get Telangiectasia. Telangiectasia spots seem to more commonly appear on areas of the body which are exposed to the sun. Therefore it has been stated by physicians that using a sunscreen of SPF 15 or greater is typically recommended. There are no proven preventative measure and efforts to remove the spots by laser are not always successful. Many people choose cover-up cosmetics such as a concealer or a foundation make-up as an alternative to the costly procedure of laser which doesn't appear to bring long-term results.” Read more of Denise’s blog: : http://sclerodermasupport.blogspot.co.uk

Scleroderma News: Scientific & Medical

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Super-Specialist Clinics For All: Introducing an exemplary model of care from North East London By Lisa Elam Patients with Scleroderma are part of a minority of patients considered to suffer with a â&#x20AC;&#x2DC;rareâ&#x20AC;&#x2122; disease. Although only a relatively small number of people are affected by the disease (approximately 1 in 10,000 people in the UK) it is a disease that affects multiple systems in the body and has life-changing consequences for those who are affected. In my capacity as a medical student, I was afforded the privilege of meeting many patients with Scleroderma who were lucky enough receive world class treatment at my Rheumatology p lacemen t with Professor K Chakravarty, in May 2013. I was impressed by the high standard of care and was pleased indeed to see that even patients with such a rare condition were being given the opportunity to be seen and treated in their local hospital, as opposed to travelling far afield to other specialist centres. This experience inspired me to submit an abstract to the International Workshop for Scleroderma Research in Boston, Masachussetts, in the hope of broadcasting this excellent work in the hope that the importance of patients with rare conditions receiving specialist care in their local area would be recognised by clinicians globally. In order to quantify the effects of having such specialist care provided locally, I conducted a survey of all of the scleroderma patients seen by Professor Chakravarty at Queenâ&#x20AC;&#x2122;s hospital, Romford. The results showed that 98% of patients were satisfied with the care they received, 95% of patients stated that attending their local hospital for the same specialist care that they could receive from further afield was

easier financially and from a convenience perspective. 97% of patients felt that their disease was well controlled due to their attendance at the specialist clinic. The poster was very well received at the Scleroderma Workshop and many clinicians and scientists alike were interested to see how this model of care could be replicated on a wider scale. The poster (pictured above) included information on the possibility of improving on this model of care further still, by utilizing expert patients in order to create a truly holistic and supportive model of care for patients with scleroderma. I would like to thank the Scleroderma Society for sponsoring my attendance at the International Workshop for Scleroderma Research and look forward to working with them in the future in order to raise awareness amongst healthcare professionals about Scleroderma.

Scleroderma News: Scientific & Medical

Specialist Clinics at the Royal Free Hospital, London: The rheumatology department is a major centre for rheumatology y and connective tissue diseases providing high quality care for the full range of rheumatic diseases including spinal pain through a physiotherapy-led service. In addition to providing secondary care for rheumatic disease to the local population, we have particular expertise in multisystem connective tissue diseases, especially scleroderma (systemic sclerosis). Location: Lower ground floor, Royal Free Hospital, London NW3 2QG Appointments can be made following a referral from a GP, and may be made through the choose and book system, or as tertiary referrals from other hospitals.

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Cathy Can Help! Fight Scleroderma the fashionable way Cathy Renwood, 44, from London, has had Linear Morphea since the age of 10. When she was 20 she had to have major surgery after she lost all movement in her right arm, due to Morphea tightening her chest wall. Cathy had her chest wall and right breast rebuilt using skin grafts. After the ordeal Cathy was left with scarring and was forced to learn how to dress around this. Cathy said: “Luckily I am someone who loves shopping, but this was still sometimes a challenge! “Because of this I have recently started a Personal Shopping Business. I specialise in Post-Mastectomy Fashion

and dressing around scars. I truly believe that everyone should look and feel their best. Some of us have a bit more to dress around but this is always possible.” “I am based in London and would like to offer anyone with Scleroderma 20% off any of my services. Also if anyone in the London area is hosting/having a charity event, I would like to donate a half day Personal Shopping Session.” For more information on Cathy’s work, take a look at her website www.thestyleangel.co.uk.

Break Time Can you find all the Sclero-words?

Scleroderma News: Pharmacy

Can You Solve the Riddle? A father and his son are in a car accident. The father dies instantly, and the son is taken to the nearest hospital. The doctor comes in and exclaims "I can't operate on this boy." "Why not?" the nurse asks. "Because he's my son," the doctor responds. How is this possible?

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Notice board Local Contacts and support services Local Group Co-ordinator: Liz Holloway liz@sclerodermasociety.co.uk, 01243 539466

North Wales Kate Owen angharad.owen48@btinternet. com 01492 515834

West Sussex Jo Frowde jo@sclerodermasociety.co.uk 01403 741445 Wiltshire & North Hampshire Lynn Morton lynnm@sclerodermasociety .co.uk 01980 863444

Bedfordshire Rita Boulton ritaboulton@gmail.com 01767 312544

East Midlands Cheryl Darch cheryl@sclerodermasociety .co.uk 0116 2717180

Oxfordshire & Berkshire Melanie Bowen melanie@sclerodermasociety .co.uk 01865 517033

Buckinghamshire & Hertfordshire Marilyn York andrewandmarilyn@bt internet.com 07702 592 387

East Sussex Rosanna Clifton rosanna@sclerodermasociety .co.uk 01424 426738

Powys & Shropshire Jennifer Ames ames60@talktalk.net 01544 267988

East Yorkshire Lynn Hind lynn.hind@hotmail.co.uk 01482 354312

Scotland Frances Bain iainandfrancesbain@msn.com 0131 477 1122

Essex, Kent & East London Amanda Thorpe dollydumpling23@gmail.com 01702 344925

South London Celia Bhinda mcbhinda@btinternet.com 020 8698 6294

Hampshire Tracey James tracey.james93@ntlworld.com 02392 677476

South Wales Belinda Thompson belinda@sclerodermasociety .co.uk 02920 625056

Lancashire & North West Yorkshire Sheila Procter sheila@sclerodermasociety. co.uk 01282 429004

South West England Judith Foster judithlfoster@gmail.com 07985 335 336

Burton on Trent Helen Nutland helen10burton@yahoo.co.uk 01283 566333 x5247 Cornwall Alex Pooley alex@sclerodermasociety. co.uk 01736 755845 Derbyshire, S.Yorkshire, Staffordshire & Cheshire Lynette Peters lynette@sclerodermasociety. co.uk 07947 350815 Derbyshire, S.Yorkshire, Staffordshire & Cheshire Diana Twigg diana@sclerodermasociety. co.uk 01298 24539 Devon Anne Sheere anne@sheere14.orangehome .co.uk 01752 338156 East Anglia Jacky March jacky@sclerodermasociety .co.uk 01394 286637

Merseyside Helen Lingwood jonandhel@sky.com 0151 2801194

Surrey Nicky O'Shea nicky.oshea@live.co.uk 01483 764524

North East England Jessie Pickering 01388 527840

West Midlands Jane Beach jane.beach@blueyonder.co.uk 01527 459552

North East Scotland Susan Wilson wilsonsusan1@sky.com 077 40185627

West Sussex Lesley Dodd lesleydodd@hotmail.co.uk 01903 753971

Join us on Facebook! www.facebook.com/ sclerodermauk Online Support We have set up a new and complementary community powered by Health Unlocked. If you are a Facebook user you may have seen advertisements pop up on your page. Why not give both the forums a go? Have a look around, meet and get support from other people with Scleroderma.

Inspirational Quote of the Season “I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” ― Nelson Mandela

Scleroderma News: Local Groups

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Contacts Connecting you to Scleroderma Professionals, groups and nation wide support networks Steve Holloway (Secretary) steve@ sclerodermasociety.co.uk

Carers Support Group: Michael Thorpe 01702 344 925, MTDAAC@live.co.uk

London Royal Brompton Hospital Respiratory queries: Lucy Pigram 07758 8943175

Susie Hoare susie@

sclerodermasociety.co.uk

Specialist Nurses: Nurse led lines for general inquiries only, in non emergencies. If the nurse is unavailable please leave a message:

Office & Administration Manager: Amy Barrick

Liverpool Aintree University Hospital: Jan Lamb

Newcastle Freeman

020 7000 1925, amy@

0151 525 5980 bleep 2231

queries: Karen Walker

sclerodermasociety.co.uk Helena Rozga Helena@

sclerodermasociety.co.uk Local Group coordinator: Liz Holloway, liz@sclerodermasociety.co. uk

Bath Royal National Hospital for Rheumatic Diseases: Sue Brown 01225 428 823 Belfast Ulster Hospital: Audrey Hamilton 02890

Helpline Manager: Helena Rozga, Helena@

561 310

sclerodermasociety.co.uk

Dundee Ninewells Hospital: Steve McSwiggan 01382 633 957

Event enquiries: Susie Hoare, susie@ sclerodermasociety.co.uk

Manchester Hope Hospita: Liz Wragg and Catherine Lambe 0161 206 0192

Hospital Scleroderma 0191 223 1503 and Pulmonary hypertension: Rachael Crackett / Julia De Soyza 0191 213 7418 Portsmouth Queen Alexandra Hospital: Paula White / Julie Ingold 02392 286935

Leeds Chapel Allerton Hospital: Elizabeth Tyas 0113 392 3035

Scleroderma News Write to: The Scleroderma Society Bride House, 18-20 Bride Lane, London EC4Y 8EE Phone us: 020 7000 1925 Email the editor: Hollie@Scleroderma society.co.uk

Printing & Publishing: Jarvis & Company

Events Calendar Calendar @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 9.00â&#x20AC;&#x201D;21.00 every day. Call 0800 311 2756.

London Royal Free Hospital Scleroderma queries: 020 783 02326 and Pulmonary hypertension: 020 7472 6354

The Scleroderma Society is a registered charity: 286736 Scleroderma News: Contacts

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