Putting a spring in your step
Scleroderma News
Turn towards the sun:
May Issue 2014
Prepare for World Scleroderma Day Page 17
In this issue:
You look Fabulous! Promoting a Positive Body Image
Stene Prize Winner 2014
Scientific & Medical News
News From The Third World Congress The Scleroderma Society is a registered charity: 286736
Welcome! Spring has sprung! Hello, and welcome to the second issue of Scleroderma News 2014! I am writing this piece for our newsletter on April 14th. There is nothing particularly significant for me about this date except that it is a glorious day and I am sitting in my garden. The sky is blue and I have turned my chair towards the sun.
Barrick (who works part time Tuesdays to Thursdays and takes care of the office including memberships, finance and other administration). They are full of brilliant ideas on how to improve the way we do things and have a sharp focus on excellence of service and efficiency, so a good team.
As I reflect on what I have just said I am reminded that “turning towards the sun” is the theme for our World Scleroderma Awareness day. Amy Baker will tell you more about our plans this year and how you can get involved later on in this newsletter.
As we leave the wet and grey winter behind, I am also thankful for the seasons, particularly spring and summer, when brighter colours paint our landscapes and we feel more motivated. So let us all join in and have some fun for Scleroderma Awareness weekend 27th to 29th June and “Be Bright! Be Blue!” for the Scleroderma Society.
While I am looking at the sun and I reflect on the Scleroderma Society, I am extremely proud and thankful for all of our supporters. Whether it is you just saying “hello” or that you “like” us or “follow” us on our social media sites, or you are involved as a volunteer or fundraiser, it is fantastic to know that our “community” is growing and increasing in strength and energy.
I look forward to seeing you all at our AGM and conference on July 19th. Best Wishes
Helena
I am also thankful for our small team of staff, Amy Baker (who works full time and looks after volunteers and fundraising), Chloe Kastoryano (who works Mondays and Tuesdays dealing with research awards, leaflets, health professionals liaison, conference planning and other projects), Amy
Editor’s Note: Hello everyone, and welcome to this Spring issue of Scleroderma News. The birds are singing, the trees are laced in beautiful shades of pink, and the sun that we’ve missed so badly is beginning to show its divine face. Yay!
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
Spring brings with it an exciting new chapter in my life, as I am set to achieve QTLS (Qualified Teacher Status) this May. Although I have been teaching for the past three years, making it official with the achievement of my (third) degree is a monumental achievement for me. My journey has not been easy, alongside all the usual teaching related issues, I have had to battle to overcome health problems in equal measure. Though it has tried, Scleroderma has not beaten me, nor stopped me from attaining this goal. With this, my message for all of you out there, is: Fight back, reach for the stars, and don’t let Scleroderma get in your way! Until next time…
Hollie xXx Page 2
Society News The Latest News - Spring 2014 West Midlands Group News: The West Midlands support group held its first face to face meeting on Thursday 27th March in Birmingham. We enjoyed a drink whilst sharing experiences of living with Scleroderma and many good tips were passed on! Jane Beach said: “We were absolutely delighted to be joined by Liz and Steve from the society and to hear more about their important work.” A further West Midlands get together has been booked for 12th June at 1pm in Cafe Zest on the second floor of House of Fraser Birmingham. All welcome!
A Local Group Meeting is Proposed: Wales / Cardiff Belinda Thomson is hoping to set a date for a get together, possibly the middle of September if anyone is interested in arranging this, please can they email her directly at the following email address: belinda@scleroder masociety.co.uk. She says: “At the moment I am thinking of around September 18th so hopefully all holidays will be done and children and grandchildren will be back at school.”
Group News From Lancashire Above is a lovely photo sent in by Sheila Procter of ‘the Lancashire Lasses.’ The girl’s last meeting took place at Sycamore farm in Burnley. Their next meeting is on Monday 19th May, at 12pm and will also be at held at Sycamore Farm. For more information contact Sheila using the details featured on our Notice Board page.
Scleroderma News: News
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The Challenge of Disfigurement: Changing Faces – Who we are and what we do By Deborah Mechaneck, Regional Officer, East and South East Over one million people in the UK have conditions, scarring or marks that affect the appearance of their face or body. Other people’s reactions to their appearance can make their experience very difficult. They often face staring, intrusive questions, teasing, prejudice and discrimination. Everyday situations like walking down the street, making friends, using public transport and applying for jobs can be daunting and overwhelming.
“It wasn’t being in hospital that scared me most. It was walking down the street afterwards. People stared at me, called me names or crossed over to avoid me. I could tell they were embarrassed but their reactions really upset me. I felt so lonely and it was easier not to go out.”
- Quote from a Changing Faces supporter One of the most difficult problems someone with a disfigurement has to face is the assumptions people make about them. Three common assumptions that people make are: 1.
2. 3.
People with an unusual appearance lead second rate lives – good looks are believed to be the key to success; People with disfigurements are ‘different’, ‘abnormal’ or as in horror films even ‘scary’ or ‘nasty’; People can, and should, get their condition ‘fixed’ by a surgeon.
Such thinking and assumptions can have a negative impact on people’s lives and lead to prejudice and discrimination. Changing Faces is the UK’s leading charity supporting and representing people with disfigurement and enabling everyone, whether directly affected or not, to face disfigurement with confidence. The charity’s work involves: Providing information, advice and support, to individuals, parents and teachers, both practical and emotional directly through our Changing Faces Practitioners or through a wide range of self-help resources. Offering staff training and consultancy for professionals and policy-makers to help create fair and inclusive environments. Campaigning for social change through promoting a society in which people are treated fairly and equally. Providing a Skin Camouflage Service, an important addition to the care that we provide.
Scleroderma News: Positive Body Image Special
What is the Skin Camouflage Service and how does it work? For someone living with scarring or a skin condition that affects their appearance and confidence, specialist camouflage products offer a way to cope. The service helps individuals to regain self-confidence and independence. Changing Faces’ regional officer Deborah Mechaneck, explains how the service works. “Our trained practitioners select the best colour match for each person’s skin tone. They then teach clients how to apply the camouflage creams to improve the appearance of the affected areas. These creams can provide effective waterproof cover for a wide number of skin conditions including birthmarks, psoriasis, vitiligo and those that cause scarring.”
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There is no charge for the consultation. However, Changing Faces is a charity and the Skin Camouflage Service relies on donations from the public. Deborah says: “It costs us around £50 to provide each consultation so donations are always welcome to help us continue this and other services.” The service is available to anyone who would like to learn how to camouflage a scar or skin condition and is suitable for men, women and children of all ages and ethnicities. Deborah adds: “After the initial consultation, clients are given an advice leaflet to take away with them to remind them of how the process works. It includes information about how to use a moisturiser, barrier cream, sunscreen or medical preparation, prior to applying camouflage cover, which may be relevant to people with scleroderma.” The Skin Camouflage Service helps over 5,000 people every year. Deborah has sat through over 30 Skin Camouflage consultations herself and has seen first-hand the difference it makes to people’s lives. Some of the following quotes demonstrate how beneficial the service is: “I don’t use skin camouflage every day, but when I’m meeting someone for the first time it stops vitiligo being a distraction” “I know the scarring won’t go away but now I can just be myself again” “When I look in the mirror without it, all I see is redness. As soon as the make-up’s on, I feel so confident and can just get on with my life” – service user with rosacea “My volunteer was absolutely lovely, a pleasure to be around. Very helpful and patient and showed me great products and how to use them” “When Changing Faces came to the Society AGM & conference last year, their stand looked very interesting & I strolled over for a closer look. Along with hundreds of others, I'm sure, I have long hated my reduced, furrowed lips, and avoided lipstick for years. I was persuaded, however, to give it a try and ended up choosing quite a dark red lip liner just to see what it would look like; expecting to remove it immediately! It was certainly rather dark , but applied outside the lip edges and filled in, I suddenly had lips again and the general feedback was positive. I have used a quieter colour since. It takes a bit of time and care, but is well worth the effort.” - Liz Holloway For more information visit:
The Beauty of Permanent Make Up By Joanna Twyman One of the most popular reasons to have permanent make up today would be to eliminate the daily chore of applying your usual brow, eye or lip make up. Fair, sparse, or uneven eyebrows can be totally transformed into beautifully natural and perfectly defined brows, eyes can be made to look bigger, brighter and naturally made up and lips can be perfected with a lovely hue of colour, making them look naturally more even and fuller if desired. Permanent make up is the art of applying coloured pigments into the upper layer of the dermis (skin) to enhance your appearance. Promoted by doctors and beauty journalists this treatment is a hygienic and safe beauty essential for those wanting to look their best. Joanna Twyman has been specialising in the art of permanent make up since 2001. With a vast array of colours available Joanna uses her experience and knowledge to custom blend the pigments to each individual skin tone. The pigments used are non reactive, fragrance free with no emollients added. The results of the treatment can be a subtle or dramatic as you wish. For some people this is a total vanity treat but permanent make up isn't always about vanity alone, for others it enhances confidence and femininity, especially when an individual has been affected by cancer, ill health or alopecia. If you would like anymore Information contact Joanna on 01702 230356 / 07733334665, www.joannatwyman.co.uk.
www.changingfaces.org.uk
Scleroderma News: Positive Body Image Special
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Fight Scleroderma the ‘Lynn’ Way Inspirational Lynn shares her top beauty tips ‘Who are you?’ ‘Where did Lynn go?’ These questions consumed me every time I looked in the mirror after being diagnosed with Diffuse Scleroderma. How did I initially cope psychologically and emotionally, having to face the world as my facial features started to dramatically change as I morphed into what is medically known as Mauskopf (mousehead?) These changes included thin, pursed lips, a pinched nose and thick shiny taut skin. My eyelashes and eyebrows became sparser by the day, my hair thinned and, to top it all, my hands and fingers started to curl. Living with Diffuse Scleroderma in a world where people are appearance conscious is not easy. However, in this day and age I am lucky that there are beauty aids readily available, such as hair extensions, which help to lift my selfconfidence when I step out. My personal approach to Diffuse Scleroderma might help someone who is also diagnosed with it.
Look for a positive. I have no wrinkles due to the overproduction of collagen. Always put in the extra time and effort to look your best without compromising your health. For example I wear layered under garments to keep warm and I never leave my house without applying makeup, even if it's just drawing in my eyebrows and adding a slick of blusher. Make up can make a big difference. Dress up for special occasions. Despite needing assistance sometimes, due to restrictions with flexibility and curled fingers, I will still make a point of wearing a glamorous outfit, accessorized with jewellery and get my hair done. Take the opportunity to use procedures that will improve your looks. I had laser treatment to my face to help control the Telangiectasia (red spider veins). I also had some fat cells transferred to my face, which has given more mobility to my face and minimized my mask-like appearance. Don’t hide, no one is perfect. NEVER GIVE UP!
Celebrating Easter ...Because it’s not all about chocolate! Many of our members have been organising fundraisers this Easter, just like Debbie Jardine, who organised an Easter coffee morning to raise funds in memory of Robert Barrow. Debbie organised a range of activities to raise as much money as possible for the society, with a raffle, cake sale and Easter egg decoration competition. Debbie said “the kind generosity of our customers once again made our Easter Coffee Morning a great success. All monies collected this year were in memory of Bob Barrow a customer and close family friend. A fun time was had by all the children and adults alike”. The Easter coffee morning raised a fantastic £300 for the society.
Scleroderma News: Positive Body Image Special
If you would like to organise an event just like Debbie then get in touch with Amy today: fundraising@sclerodermasociety.co.uk
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London 2 Brighton Challenge In loving memory of Dave Willis
By Noreen Walsh, who will be 52 in a couple of weeks when she completes the challenge… “London 2Brighton is an extreme challenge that you can run, jog or walk. It covers 100km, 62 miles in real money, and you are given 30 hours to complete. I have done the challenge twice before for another charity and raised a lot of money. I think that to raise money you need to do something that people feel is a bit strange or something they would not do themselves. I run a10K for charity and get nowhere near the same response as this challenge. It is not only a physical challenge but a mental one! By the time you complete half of your challenge you are physically and mentally exhausted but the camaraderie keeps you going. It is so well organised you feel safe all the way. My friend Dave Willis died of complications related to
scleroderma and his anniversary will be in May this year. What a better way to pay tribute to the struggle that those with this cruel disease face than to push yourself to the limit! I am not going to tell anyone that it is easy! If you can walk you can complete this challenge. (Blisters never killed anyone). I have completed this challenge before in 27hrs but hope to go a bit quicker this year. However speed is not the issue! I am not 18 any more and am not doing it to set any records. I want to do it to raise money for the scleroderma society in memory of Dave.” Support Noreen today: http://uk.virginmoneygiving.com/ NoreenWalsh.
DO YOU HAVE A FUNDRAISING EVENT IN THE PIPELINE? PERHAPS YOU HAVE A FUNDRAISING SUCCESS STORY THAT YOU WOULD LIKE TO SHARE WITH READERS OF SCLERODERMA NEWS? We’d love to hear from you! Get in touch with Amy Baker, at: amybaker@sclerodermasociety.co.uk and you could be featured on this page!
Scleroderma News: Fundraising
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Spring’s Fundraising Stars Our Star, Daniel Thomson Daniel lost his Grandma; Dianne Roebuck to Scleroderma on 13th February 2013 aged 69. Joanne Thomson (Daniel’s Mum) said: “Daniel did not want the anniversary
to be a sad day and wanted to do something funny to raise money and make us all smile. He asked me if he could shave his head and raise money for Scleroderma. For a self-conscious 12-year-old boy, I thought this was a very brave and wonderful thing to do, so said yes straight away.
We approached his school to ask for support and they agreed they would let him do this at school and encourage the children to support and sponsor him. Daniel has not only raised £430 with money still coming in, he has also done a fantastic job in raising awareness of the condition. The local newspaper is featuring his story and his friends at school posted pictures on Facebook explaining what he has done, some of which have had over 1000 likes.”
Interview with Dryathlon Champion Chris Jones
What is a dry athlete? A Dry athlete is basically someone who gives up alcohol for a period of time! In my case, 2 months. I was on average drinking around 25 pints of beer a week and the longest period of time I experienced without alcohol before was a week. I am particularly proud to achieve 2 months. Why did you choose this fundraiser to support the Sclerod e r m a S o c i e t y ? I chose the Scleroderma Society because Scleroderma and Raynaud’s are currently affect-
Scleroderma News: Fundraising
ing my partner’s mum. I was determined to raise money for this cause because she continues to battle on and keep smiling and is a fantastic inspiration for us all. I had an incentive to lose weight as well (currently 2 stone lost) and thought the idea of doing a dryathlon for a cause particularly close to my heart would be a good idea! The whole experience has changed my life. How much money did you raise? In total, I raised £800. My initial target was £250 but I raised 3 times more! What would you say to others considering fundraising for the Society? I would definitely encourage people to consider fundraising for a
fantastic charity. I received a letter and certificate thanking me for my efforts and the official Facebook page constantly promoted my just giving page in order to raise as much as possible.
Thank You... Company Giving Thank you to David Grieve for nominating us to be included in his company Lands’ End’s Giving and Sharing Scheme that raised £246.00 for the society. If your company has a giving scheme please consider nominating the Scleroderma Society.
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Waitrose fundraising Success Story... On the 9th April we were invited to Waitrose in Newport to hold an awareness and fundraising event. This event was held in memory of Victoria Garratt, the former Branch Manager, who passed away a year ago, aged 33 from complications relating to scleroderma. Waitrose were wonderful on the day and their generosity showed how much Victoria meant to them. Waitrose supplied us with three wonderful hampers to be raffled and our volunteers brought plants and books to sell. We had a range of informative literature about scleroderma. It was a really successful day, as we had a constant stream of customers wanting plants, books, raffle tickets or just to donate to us. All the volunteers were great, speaking about why we were holding the event and explaining scleroderma and how the disease affects them. On the day we raised a fabulous £420.33 for the society and raised a huge amount of awareness amongst the general public. Jennifer Ames said: “Gordon and I enjoyed the time we spent there. Yes it was hard work but the tiredness was more than made up for by some lovely people we met, many were interested and caring. Some asked why they had not heard of Scleroderma before though they had heard of Lupus, and found it hard to believe a sufferer could be affected in so many ways. I was selling plants and books I gave away a pack of snowdrops and a parsley plant, and the recipients, a young couple and an elderly lady, were so pleased they beamed from ear to ear. I asked the elderly lady to remember us when the Snowdrops flower next year, I hope that she is still around. It has been a hard winter and an early spring for us but we certainly got a lift when total strangers showed they care.” Thank you to all of the volunteers who made the day possible; Jennifer and Gordon Ames, Jacqueline Cox and Helen Mason and to the Waitrose Management; Andrew Yip, Pam Edwards and Tim Fielding for their support. We are proud to be working in partnership with this store and are planning another event to celebrate World Scleroderma Day in June. If you live close to Waitrose, Newport and would like to be involved with this event please get in touch with Amy, amybaker@sclerodermasociety.co.uk. Photos: Top: Andrew Yip, Pam Edwards, and Amy Baker. Middle: volunteers fundraising on the day and bottom: Tim Fielding, Jacqueline Cox and Jennifer Ames.
Scleroderma News: Fundraising
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And The Winner is... Marinka Stein Due Sørensen, from Denmark wins the 2014 Stene Prize “I’m originally from Ribe – an old and exciting city with a lot of history. I now live in the countryside near Silkeborg in one of the most beautiful parts of Denmark. I love to visit the forest or to walk by the sea. I spend most of my time with my family. I have been married to my husband Michael for 12 years. We have two lovely sons: Valdemar who is eight years old and Storm who is three. I am currently unemployed because of my illness, but I used to work as a teacher. I am educated to teach literature, history, biology and arts. I paint pictures and I love art in all forms. I read a lot and I enjoy being told a good story, whether it is a book or a film. I work out three times a week to keep my body fit – it also has a good effect in terms of my illness. In the summertime, my family and I visit different museums and marketplaces, where we re-enact the life of the Vikings. It is a hobby we can share as a family and we have a lot of friends in the ’Viking society‘ from all over Europe.”
Dancing down the Road of Life, winning essay of “Vision 2043 – my ideal world for people with a rheumatic or musculoskeletal disease” I imagine the road of my childhood lying before me, feeling the pavement beneath my bare feet, letting myself follow it, losing myself in the feelings and thoughts of bygone days. I take the first tentative steps and let my thoughts carry me off to a time when the wind blew in my hair. How my tiny little feet ran and ran, intoxicated with the speed, an intoxication that spread to my stomach, forcing from me squeal upon squeal of childish delight. I remember carefree summer evenings with dew between my toes, splashing about in water and exploring treetops, looking for the next foothold. Those little feet carried me high and low. The world was mine. The feeling of freedom grows in me, and fearlessly I take the next step along the road of my childhood; this step brings memories of a youth filled
with pain, recollections of a slow, testing journey. Remembering how the freedom of childhood turned into a bodily imprisonment, dwelling on the pain, letting it enter me, allowing myself to be overwhelmed by it, wallowing in it. The next step is a huge battle. It is a battle against my own desire simply to give up – to give up and crawl into a safe hiding place away from the little needles that now cover the pavement. Yet the battle has to be fought – not just the battle against the disease, but also the battle for the right to exist in a competitive world where illness is unwelcome. Those stubborn feet, that stubborn spirit, take me several steps further. Memories of trying out medicines that don’t work or have terrible side effects disturb me and beg me to carry on fighting. The little needles are still spread before my feet, beckoning, taunting; and feelings of powerlessness ride roughshod over my fighting spirit. One mighty step more and I look back down the road of my childhood, my youth and my adulthood. I see my life as I have lived it up until now. I turn and open the door to the life to which
Scleroderma News: Stene Prize Winner
the battle has led me – not just battle, but the researchers’ battle, doctors’ battle… The battle for bearable, dignified, wonderful life fered in 2043.
my the the of-
My feet stride stubbornly, greedily, further on into life, and many doors open along the way. The battle has ceased because my body is now able to work, to live. The researchers have found a way to tell which medicine will work for which person, so life does not revolve around spending time and resources trying out different medicines. Types of medicine have been found that work gently, but are so effective that the disease is suppressed, to the point that my feet now skip along without any fear of needles on the pavement. My body is at peace, and the devastating exhaustion gradually leaves me as my feet dance along. The taunting needles have been swept aside and if ever they do creep back onto parts of the pavement, it is only for a little while because pain relief has become so much more holistic and effective. In this life, we are not given a diagnosis to be hung up as
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[Continued…] a warning sign; we get a diagnosis but at the same time we are told that we can be perfectly healthy, happy and active people who have rheumatism. In this life, a person with rheumatism is regarded as a strong person – a person who is capable and willing. Knowledge and shared humanity give us the desire to find our place in life, to discover what we can do better than anyone else. If our bodies sometimes suffer a day’s sickness, there is an effective safety net that catches us, supports us and helps us. No more dreams will be shattered on that needle-strewn pavement! I stand in this life and let it embrace me, relishing the knowledge of how the battle has been won with the help of research, skill, understanding, humanity and those ever stubborn feet. While I bask in this embrace, I see my two lovely sons striding along the pavement, their father between them holding their hands. They are smiling and laughing, and behind their smiles there is no worry that something might happen that will hurt their mother. They are just genuine, joyful smiles. They let go of their father’s hands, and their little feet carry them, wind-blown and squealing into my arms where they are met by a dance and a song of life. This is my journey, but also that of many other people. My hope and my dream is that, like everyone else who has a rheumatic disease, I will be able to stand in this life in 2043 and reap the rewards of all the battles that have been so well fought! By Marinka Stein Due Sørensen
^ Klee’s portrayal of the Sunflower is a work of art
Inspired By Paul Klee Art Competition This year we are looking to our members to produce an artistic piece to symbolize what this years World Scleroderma Day theme means to you. The theme ‘Turning toward the Sun’ was inspired by Paul Klee’s, 1933 sunflower piece. To take part in this competition all you need to do is send in your artwork by Friday 20th June. An external panel will then judge all the work and decide upon a winner.
Scleroderma News: Competition
The winning artwork will become the cover for the next Scleroderma News. Artwork will be displayed at the World Scleroderma Day Celebration on the 3rd July and then at our Annual Conference on the 19th July in London. Send your artwork to: Art Competition, The Scleroderma Society, Bride House, 18-20 Bride Lane, EC4Y 8EE. Please note we will be unable to return artwork unless a stamped addressed envelope or container is provided.
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The Third World Congress on Systemic Sclerosis, Rome 2014 This February we returned to Italy, to the capital city of Rome, following on from the inaugural congress in Florence in 2010 and the second in Madrid in 2012. Susie Hoare reports... The World Congress is an opportunity for scientists, clinicians, allied health professionals and others with an interest in systemic sclerosis, including people with scleroderma themselves, to come together and find out about the latest updates and news from across the research world. The patient arm of the congress enables people with scleroderma and their friends and families to find out more about the condition, hearing from leading experts across the world. The congress opened with a ceremony including a welcome from Alexandra Klee, the patron of the World Scleroderma Foundation. Annie Kennedy, President of FESCA (Federation of European Scleroderma Associations, an umbrella group of patient support organisations in Europe), gave a thought-provoking speech from the patient’s perspective. The opening scientific lectures then gave an overview of the cutting edge in scleroderma research and what’s new in that field over the last two years. Thursday also saw a round-table networking session for leaders of patient groups where the discussion centred on the main challenges faced by the patient organisations in different countries. While some countries have strong backgrounds in fundraising, this is very much a cultural phenomenon somewhat localised to certain countries such as the UK and the US, where we have a culture of partaking in sponsored events and other activities to raise funds for charitable causes. We are lucky this exists in the UK, as the majority of our European and global counterparts don’t enjoy such a proactive fundraising culture, as the
Photo: Professor J. Van Laar speaks at the World Congress
representatives from patient groups in other countries explained to us, thus making finding income a lot harder for them. Other issues discussed around the table were problems faced by patient groups in some countries where scleroderma is not recognised as a rare disease and as such does not receive sufficient funding. In other countries, access to, or even existence of, scleroderma clinics was a real concern. Now let’s move on the medical sessions, where the programme kicked off with Professor J. van Laar’s talk entitled, “Why did I get scleroderma and will I be cured?”. Professor van Laar is Professor and Chair, Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, the Netherlands. The questions he posed were:
Scleroderma News: World Congress Feature
Why did I get scleroderma? And will it be cured? His answer to both questions was: The good news is we have an answer! - The bad news is the answer is that we don’t know! Prof. van Laar described the scleroderma puzzle as consisting of many questions involving fibrosis, fibroblasts, growth factors, skin, genes, immune cells, environment, autoantibodies, and more. He explained scleroderma is thought to be an autoimmune disease, and that autoimmune diseases arise when the immune system “goes awry”. He described the immune system as being like an “orchestra of like-minded musicians. Practice and fine-
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tuning are everything.” Prof. v Laar highlighted the following as evidence that scleroderma is an autoimmune disease:Scleroderma autoantibodies can be detected in the blood of (most but not all) scleroderma patients; Limited and diffuse scleroderma are associated with different autoantibodies; Immune cells in scleroderma are abnormally activated; Studies on DNA from scleroderma patients have revealed genetic factors involved in immune responses. He went on to look at some very interesting information regarding lessons learned from twin studies: studies on identical twins have actually shown a low concordance for scleroderma, indicating scleroderma cannot be explained by genetic factors alone. When one identical twin has scleroderma, it is rare for the other twin to also have scleroderma. Prof . v Laar then spoke about the risk factors for increasing the risk of developing scleroderma: Genes (mostly related to immune function); Female gender; Possibly chemicals (in some situations). The risk factors influencing the severity of scleroderma: Male gender; Higher age; Smoking. Prof . v Laar closed by explaining, although we don’t yet know the cause and the cure, we’re getting there thanks to: Promising results from recent clinical trials (ASTIS); International collaboration between patients, scientists and doctors (EUSTAR, World Congress, etc); Rapid spread of news via the Internet. Continuing on the next international speaker, we heard Professor Distler of University Hospital, Zurich, Switzerland, speak about why breathing is so difficult for some people with scleroderma. In short, it is multifactorial, with many possible reasons. The most frequent in systemic sclerosis are lung fibrosis and pulmonary arterial hypertension, leading to impaired gas exchange. Professor Distler also explained that problems can be caused by tight skin, as breathing requires elastic skin so the chest can expand to inhale. If you have tight skin, this can limit the amount you can expand your chest and makes breathing hard.
Photos: Above Professor O. Distler and below Professor C. Denton.
Lung fibrosis, which occurs in some people with systemic scleroderma, causes scar tissue formation in the lungs. Having scar tissue in the lungs impairs the ability of the lungs to exchange gas efficiently, leaving people short of breath. Pulmonary hypertension, which is raised blood pressure within the pulmonary arteries (the blood vessels that supply the lungs), also causes impaired gas exchange, leaving people breathless or finding breathing hard. Professor Distler showed us the “line-up” for a typical day of testing for patients at his clinic:
9 am Blood tests, capillaroscopy
10 am Echocardiography
Scleroderma News: World Congress Feature
11 am Cardiac MRI
1 pm CT lungs
2 pm Occupational therapy
3 pm Lung function, 6 MWD
4 pm EKG
5 pm Consultation with doctor
The goal of testing for lung disease is early detection, leading to early treatment and better outcome. The causes of difficulties in breathing are multifactorial, and if someone has problems with breathing, all the possible causes should be examined. Following on from Professor Distler’s talk, we then heard about breathing problems from a patient’s perspective, and
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Photos: Above and below Professionals, speakers and patients from around the world gather at the World Congress.
[Continued…] and what you can do to help yourself and make life easier. The presentation was given by Kim Fligelstone from the UK, with input from a range of sources including people with scleroderma, doctors, and medical associations supporting people with lung conditions. Kim gave us a vast array of tips provided by people with difficulties breathing, and this is a selection of some of those: Conserve your energy: Put everything you need within your reach, cupboards and wardrobes you don’t have to bend for, oOrganise yourself and keep items in the same place
Bedroom: Get up slowly, relax. Use lighter duvets. Two single mattresses on double bed. Use extra pillows to raise head. Put oxygen concentrator outside bedroom.
At home: Avoid bending, lifting or overstretching. Use light vacuum cleaner and irons, sit down where possible e.g. ironing, food preparation. Use a kitchen timer, a tray or trolley.
Going out – plan ahead: Avoid rushing: plan journey time. Walk at your pace and consider a walking stick. Consider a wheelchair too. Spread shopping into lots of bags! Keep spare medicines in car and with you when travelling.
Washing and dressing: Put on bathrobe after washing / use separate towels, avoid bending forward drying feet, have seats everywhere e.g. - in shower, by sink, by mirror. Wear loose clothing so it is easier to dress yourself. Cut sock elastic and use a long-handled shoe horn.
If you are interested in reading the full set of tips from this presentation, you can download this presentation as well all the others from the congress, from the following link on the FESCA website: http://www.fescascleroderma.eu/wordpress/? page_id=368
Scleroderma News: World Congress Feature
In the next issues of Scleroderma News, we’ll continue with more detailed reports from the other presentations. We hope you look forward to hearing about the following topics: Gastrointestinal problems that people with scleroderma may experience, Dr. Janet Pope of the University of Western Ontario. Tips for helping yourself live with GI problems, useful equipment and tips for day to day life with scleroderma. The New ACR-EULAR systemic sclerosis classification criteria from Dr. Frank van den Hoogen, Radboud University Medical Centre and St Maartensclinic, Nijmegen, The Netherlands. Taking care of your ulcers, Barbara Gemmell, St. Vincent’s Hospital, Melbourne. Carers and family member, Robyn Syms, President, Scleroderma Australia. Fatigue and how to deal with it, Dr. Janet Poole, Professor in the Occupational Therapy Graduate Program, University of New Mexico.
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Preparing For World Scleroderma Day 29th June 2014
Why Not Attend Our Educational Event? On the 3rd July , you are invited to join us at the Royal National Hospital for Rheumatic Diseases, Bath, to celebrate World Scleroderma Day through an exciting educational event.
Be Bright and Blue to Support Scleroderma 27th June – 29th June:
Order your free fundraising pack today by email:
This year support us by wearing your brightest blue for World Scleroderma Day. You can raise funds in your workplace by getting your colleagues to wear their brightest blue and donate £1 or more to the Scleroderma Society UK.
bbbb@sclerodermasociety.co.uk
You can host a bright blue event! Why not get out in the sunshine and have a picnic or organise a local walk?
We would love to see pictures of you “Being Bright, Being Blue” to feature in our website gallery and in our newsletter. Please send all pictures to bbbb@sclerodermasociety.co.uk. To find out more about how you can be involved in this event visit:ww.sclerodermasociety.co.uk/ BeBrightBeBlue2.php
The day will be split with a patient focused event in the morning looking at ‘what you can do to help your Raynaud’s and Scleroderma?’ and ‘current and future treatment options for scleroderma’. The afternoon will be clinician/AHP focused providing an overview on pathogenesis, clinical features and practical management of Raynaud’s phenomenon and systemic sclerosis. For further information and to book your place visit: www.scleroderma society.co.uk/WSDCelebration2.php In partnership with the Raynaud’s and Scleroderma Association
Scleroderma News: World Scleroderma Day
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Myofibroblasts: How the study of cells can help find treatments for Scleroderma By Dr Gisela Lindahl, Royal Brompton Hospital / National Heart & Lung Institute One of the main problems in scleroderma and systemic sclerosis, at the tissue and cell level, is fibrosis. This is an out of control wound healing process causing excessive scar formation in e.g. the skin and lungs, leading to the tightness of the skin, reduced organ function and life threatening consequences in severe cases. At the Royal Brompton Hospital, one of our research goals is to study in detail the key effector cells in fibrosis, fibroblasts, to understand why, in disease circumstances, they behave in an uncontrolled manner. We want to identify the key regulators of this behaviour, and find compounds (drugs) which can interfere with these to slow down disease progression. Described here is an example of the work we undertake. The shape of the cell, and certain functions like movement, are supported and regulated by a dynamic mesh of thin stiff fibres spanning the inside of the cells, forming a part of the so called cell cytoskeleton. These fibres are made of a group of proteins called actins (stained red in the picture). Cell movement, for example, is controlled by these fibres growing at one end of the cell, causing a protrusion, and at the same time being dismantled at the opposite end, causing that end of the cell to retract, or shrink. This process is also helped by
Photograph taken by Dr Patricia Leoni-Garcia
specific proteins on the outside of the cells, grabbing on to and holding the surrounding tissue at the front end, and at the same time letting go at the back. When specific types of cells, including fibroblasts, are exposed to certain types of stress, e.g. excessive pulling stretch, pressure, or are exposed to biological substances, e.g. in response to injury, they adapt by bundling the thin actin fibres together to form thick rod-like fibres, also called stress fibres (red in the picture), in order to become stronger. A particular type of actin protein, called alphasmooth muscle actin (aSMA), is produced in fibroblasts exposed to excessive or prolonged stress (stained green in the picture). This protein is normally expressed in smooth muscle cells, for example making up layers in our blood vessels. When this type of actin gets incorporated into actin fibres in fibroblasts (in the pictures, making the red fibres appear yellow), the cells can contract like muscles, i.e. they pull at both ends and become shorter and thicker – the actin fibres have become like microscopic rubber bands. When this occurs, the fibroblast is called a myofibroblast (myo meaning muscle). In smooth muscle cells in blood vessel walls, such contraction causes a narrowing of the
Scleroderma News: Scientific & Medical
lumen (the middle space where the blood flows), and the pressure increases inside the vessel. The contraction and relaxation of these cells is a normal process to regulate blood pressure, but if excessive can cause problems like high blood pressure (hypertension). In myofibroblasts, this contracting property is essential for wound healing, as it makes the cells pull the damaged tissue together to repair and close the wound. During this process the myofibroblasts will also secrete factors, which break down damaged tissue scaffolding material (extra cellular matrix, ECM), like collagen, and produce fresh ECM to replace and build up the tissue again. It is when these processes, contraction and ECM production, become excessive, we get scar tissue formation. This pathological condition in the tissue of organs such as skin or lung is termed fibrosis. Fibrosis is primarily caused by either an uncontrolled accumulation of fibroblasts/ myofibroblasts in the injured or inflamed tissue, or a greater proportion of fibroblasts developing into myofibroblasts, both resulting in excessive scar formation. At the Royal Brompton Hospital, London, we are in search of drugs which can stop the progression of
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[Continued‌] fibrosis and are therefore trying to identify compounds (drugs) which can block either of those processes, fibroblast accumulation, or so called fibroblast-to-myofibroblast differentiation. We use a Carl Zeiss fluorescence microscope (kindly funded by the Scleroderma Society) to study fibroblasts/ myofibroblasts from scleroderma patients, and can by staining the cells using specific antibodies and dyes determine e.g. how many cells contain the aSMA type of actin stress fibres. We can then treat the cells with different compounds to see whether they affect the number of aSMA containing cells. We are currently testing a novel compound, originally developed for the treatment of cancer, which appears to have the main characteristics required also for combatting fibrosis. Some of our results were reported at the annual conferences of the American Thoracic Society and European Respiratory Society last year. While we know that extensive testing over a relatively long period of time will be required to determine the suitability of this drug for treatment of fibrosis, and of course the safe use in patients, we are at a very exciting early stage of research into a new potential drug for scleroderma.
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. Dr Mark Porter's Case Notes on Radio 4 has prompted the question to the ScSocHelpline on safety of using Omeprazole and similar medication given the new findings. The question is; If people with Scleroderma have been taking these types of drugs for many years is there cause for concern and should they stop taking as suggested to test if they still need them? Answer: Although long term use of proton pump inhibiting drugs like omeprazole does have some potential side effects the benefit of being on these treatments for scleroderma patients generally outweighs any risk. This is quite different from the widespread use of omeprazole in people without scleroderma. Acid reflux in scleroderma can otherwise lead to scarring or stricture of the oesophagus that may require surgery or might worsen lung fibrosis. Nevertheless it is sensible to have routine blood tests including magnesium levels checked, especially if your doctor is concerned about possible side effects.
Question: Does anyone know if there has ever been any research conducted into the use of artificial sweeteners (aspartame) and Raynauds? I just saw a comment about it causing autoimmune issues. I have used artificial sweetener most of my life and was just wondering! Answer: Aspartame may cause blood vessels to narrow, like caffeine and some other chemicals. In theory this could worsen Raynaud’s phenomenon but there is no major evidence to support this and I am not aware of specific research into this area. Many substances can make symptoms worse and if individual sufferers notice this then they should avoid them but at present there is no official concern about aspartame of any other artificial sweeteners being harmful. Got a question? Send it in to us and we will do our best to get it answered for you next issue!
Scleroderma News: Scientific & Medical
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Omeprazole, Lansoprazole & The Proton Pump Inhibitor Family By Dr. C Murray Inside Health has learned that there is growing concern in some quarters that we have become too quick to use them – a problem compounded by the fact that, once you start the drugs, they can be difficult to stop. For long- term users, should we as was suggested stop taking the medication for six weeks to see if symptoms disappear, have regular blood tests for magnesium levels? Proton pump inhibitors (PPI) have transformed the treatment of acid related disorders in gastroenterology over the last 20 years and are incredibly effective at suppressing acid production in the stomach. When they were initially used we felt that since they had so few apparent side effects, we were very relaxed about using them freely and often for long periods of time if they were effective. This has led to PPI prescription numbers being one of the largest of any drug world wide and many people end up on them long term. In the general population we know that this is not always (in fact often not) necessary. Recent large studies have suggested an in-
creased risk of low magnesium levels, osteoporosis and an increased risk of picking up hospital acquired lung and gastrointestinal infections. The vast majority of the general population taking PPIs will only need these for short periods and have no underlying pathology or disease that requires long term treatment. In scleroderma the situation is however different. Up to 90% of scleroderma patients will have oesophageal symptoms due to change in gullet motility and this leads to a high prevalence of acid and gastric content reflux. Constant uncontrolled reflux can lead to stricturing (narrowing) in the oesophagus (which makes swallowing worse and may need dilatation), Barrett’s oesophagus (a change in the lining of the oesophagus which can increase the risk of cancer) and there is increasing evidence that a group of patients may aspirate/inhale small amounts of acid which in turn makes pulmonary fibrosis/scarring worse. There is still some debate as to whether all scleroderma patients
should be on a PPI. The UK Scleroderma Study Group has recently looked at this and the treatment of other associated gastrointestinal symptoms and the consensus was that a PPI should be used in all those that are symptomatic since any small risks of long-term use are outweighed by the benefits. There will be some patients that can come off these medications, but the vast majority will not. Given the current paucity of other effective treatments and the fact that surgical intervention is unwise, we would are very happy to recommend long term use in patients with scleroderma, with the caveat of course that we regularly review the need and dose of all medications.
'Vision 2043' competition 2014: Your Chance to Get Your Hands on €300! The World Arthritis Day competition runs until Friday 18 July 2014. Grab your chance to help to change the future for people with rheumatic and musculoskeletal diseases (RMDs) by entering the 'Vision 2043' competition. You could win a cash prize.
There will be two winners: The European entry (from a EULAR member country) which has received the most online votes., and The Global entry which has received the most number of online votes. Winners will each receive 300 Euro! The European winner will also win attendance to the 2014 EULAR Annual European Conference of PARE in Zagreb, Croatia.
Scleroderma News: Scientific & Medical
Two runners-up will each receive 50 Euro and up to seven entries will be chosen by the Vision 2043 jury for commendation (no cash prize). Anyone can vote so make sure you tell your family and friends about your entry! See www.worldarthritisday.org/ vision2043 for more information.
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AGM / Annual Conference This year the Scleroderma Society’s AGM and Annual Conference will be held on 19th July at the Royal Free, 11- 12:00 and 12:00-16:30 respectively... We would be delighted for any members, patients, carers, health professionals or individuals with an interest in Scleroderma to attend. The theme of the day will be ‘therapies’ and we are pleased to announce that we will be joined by Consultant Rheumatologist Professor Chris Denton, Specialist Registrar for Rheumatology, Doctor John Pauling, Professor of Clinical Rheumatology, Jaap Van Lar and Clinical Nurse Specialist, Colin Beevor. In addition to the sessions we have confirmed an excellent variety of peripheral activities for the day. This includes Changing Faces’ skin camouflage team and the Royal Frees Therapies Team for complementary sessions on skin care. Scleroderma Society’s Helpline team will also be present to answer any questions and meet the members. As-per we will also be holding our raffle with our best-ever selection of prizes! We hope you are able to join what will be a thoroughly enjoyable and thought provoking day.
“I began my role as Project Coordinator with the Scleroderma Society in January. I have thoroughly enjoyed my time so far with the Society; the Trustees and staff are extremely encouraging and supportive and it’s been a joy to see how highly involved the members are. I also work part time with the Arthritis and Musculoskeletal Alliance (ARMA) in the same role. ARMA is an umbrella organisation for musculoskeletal organisations and this is how I learned about scleroderma and the Society, in addition to working in the same building as them. The Society will be holding its AGM and Annual Conference at the Royal Free on the 19th July. I have been working closely with Professor Chris Denton to finalise the programme and to ensure the day is as informative as possible. We will also be joined by Changing Faces’ camouflage team and the Royal Frees Therapies Team for complementary sessions on skin care and hand massages. I look forward to meeting many of you on what is promised to be an extremely informative and enjoyable day.” To view the full programme and to register your place please visit: http://www.scleroderma society.co.uk/AGMampAnnual Conference2.php or complete and post the form attached.
British Society for Rheumatology: Annual Conference 2014 The Scleroderma Society were at the British Society for Rheumatology's annual conference in Liverpool last week. We jointly shared a stand with the Raynaud's and Scleroderma Association to raise awareness of the conditions amongst health professionals. The event provided us with the opportunity to meet many of the researchers who are working hard to fight scleroderma and it's associated
Scleroderma News: Annual Conference 2014
symptoms, and to inform allied health professionals of the condition and of the Society. The event also provided us with the opportunity to meet other patient organisations whose conditions have associated symptoms of raynauds and scleroderma - Lupus UK and Arthritis Care. We look forward to developing these relationships and working closely with them to assist in supporting you.
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Focusing on: Scleroderma Medications and Treatment Options Immunosuppressive Therapy The following is an excerpt from chapter 23 of Systemic Sclerosis, 2nd Edition written by Dr. Laura Hummers and Dr. Fred Wigley: ‘The most popular approach to controlling the inflammatory phase of scleroderma is the use of immunosuppressive therapy. The rationale is that an autoimmune process is causing the inflammation and the downstream result is tissue damage and fibrosis. In this model, the fibrosis is an “innocent bystander” that is driven by the cytokines (chemical messengers) produced by the immune system. There are several drugs that are being used, but only a few well designed studies have been performed. These immunosuppressing drugs include methotrexate, cyclosporine, antithymocyte globulin, mycophenolate mofetil and cyclophosphamide. A recent study suggested that methotrexate did not significantly alter the skin score (a measure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they appear to work. A major area of current research is the use of aggressive immunosuppressive therapy either with very-highdose cyclophosphamide or with autologous bone marrow transplantation. Because these aggressive forms of immunosuppressive therapy have potential risks, they should be used in severe cases of scleroderma and administered as part of a research protocol.’ For a more in-depth understanding of the comprehensive care related to scleroderma download Chapter 23 of Systemic Sclerosis (pdf) by Dr. Laura Hummers and Dr. Fred Wigley, from: ttp://www.hopkinsscleroderma.org/patients/scleroderma-treatment-options
Break Time Can you solve the Sclero-crisscross?
Congratulations to Amy! We are extremely pleased to announce that Amy, our Fundraiser, was awarded her Gold Duke of Edinburgh award by HRH The Earl of Wessex at St James¹s Palace this month. To achieve the award Amy undertook a four-day and threenight expedition in the Black Mountains, where her group had to survive in ‘wild country¹ and navigate their way to their final pick up point. Amy has voluntarily been undertaking this physically demanding challenge over the past year to gain this award and we are delighted with her achievement!
Scleroderma News: Pharmacy
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Notice board Local Contacts and support services Local Group Co-ordinator: Liz Holloway lizemail99@btopenworld.com, 01243 539466
North Wales Kate Owen angharad.owen48@btinternet. com 01492 515834
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 North East England Jessie Pickering 01388 527840
Surrey Nicky O'Shea nicky.oshea@live.co.uk 01483 764524 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 West Sussex Jo Frowde jo@sclerodermasociety.co.uk 01403 741445 Wiltshire & North Hampshire Lynn Morton lynnm@sclerodermasociety .co.uk 01980 863444
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 “A healthy attitude is contagious but don't wait to catch it from others. Be a carrier.� - Sir Tom Stoppard, OM, CBE, FRSL, Czech-born British playwright, knighted in 1997.
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 Susie Hoare suzie@ sclerodermasociety.co.uk Helena Rozga Helena@ sclerodermasociety.co.uk Office & Administration Manager: Amy Barrick
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 9.00—21.00 every day. Call 0800 311 2756.
London Royal Brompton Hospital Respiratory
Carers Support Group: Michael Thorpe 01702 344 925, MTDAAC@live.co.uk
206 0192
020 7000 1925, amy@
Liverpool Aintree University Hospital: Jan Lamb
sclerodermasociety.co.uk
0151 525 5980 bleep 2231
Local Group coordinator: Liz Holloway, liz@sclerodermasociety.co. uk Helpline Manager: Helena Rozga, Helena@ sclerodermasociety.co.uk Event enquiries: Amy Baker, fundraising@
Bath Royal National Hospital for Rheumatic Diseases: Sue Brown 01225 428 823 Belfast Ulster Hospital: Audrey Hamilton 02890 561 310
queries: Lucy Pigram 07758 8943175 Manchester Hope Hospita: Liz Wragg and Catherine Lambe 0161
Scleroderma News Write to: The Scleroderma Society Bride House,
Newcastle Freeman
18-20 Bride Lane,
Hospital Scleroderma
London
queries: Karen Walker
EC4Y 8EE
0191 223 1503 and Pulmonary hypertension: Rachael Crackett /
Phone us:
Julia De Soyza 0191 213 7418
020 7000 1925 Email the editor:
Portsmouth Queen
Hollie@Scleroderma
Alexandra Hospital: Paula White / Julie Ingold 02392 286935
society.co.uk
Dundee Ninewells Hospital: Steve McSwiggan 01382 383233
Proof Reading: Rosemary Goodwin
sclerodermasociety.co.uk Events Calendar Calendar @sclerodermasociety.co.uk Specialist Nurses: Nurse led lines for general inquiries only, in non emergencies. If the nurse is unavailable please leave a message:
Leeds Chapel Allerton Hospital: Elizabeth Tyas 0113 392 3035
Printing & Publishing: Jarvis & Company
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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