Embracing your creative side!
Scleroderma News August Issue 2014
In this issue:
Inspired by Paul Klee Conference Round-up
Scientific & Medical News
World Scleroderma Day
Cover Painted by Aspa Palamidas
Celebrating Fundraising Efforts
The Scleroderma Society is a registered charity: 286736
In this Issue A round up of the treats we have in store for you, in this summer issue of Scleroderma News... Front Cover. Art by art competition winner Aspa Palamidas (pictured: left)
Pg. 2. Welcome from Susie Pg. 3 & 4. AGM and Conference Pg. 5 - 7. World Scleroderma Day: Be Bright, Be Blue & Art Competition Pg. 8 & 9. Fundraising News Pg. 10. Hot Tips & Pregnancy Pg. 11 & 12. Doc Spot & Treatment News Pg. 13. Local Group News & WIN! Pg. 14. Noticeboard & Support Art Competition results: 1st Prize (pictured above.) Check out page 7 to see who came in a close 2nd!
Pg. 15. Contacts
See how we all celebrated World Scleroderma Day, on pages 6 & 7.
Editor’s Note: Hello everyone! Welcome to this summer issue of Scleroderma News! I hope you are all enjoying the summer sun! I am looking forward to my forthcoming holiday to Tunisia. Those of you like myself, who suffer with darkened areas of skin resulting from Scleroderma, will understand the importance of keeping the sun off your skin. Later today I will be shopping for sun creams, kaftans and sun hats! Remember, a high factor sun cream is a holiday essential! Until next time...
Hollie x
Scleroderma News: Welcome
Page 1
Welcome! Here comes the sun… Summer is always a busy time for the Society, with lots of summer fundraising and events, our annual AGM and conference, and of course World Scleroderma Day on 29th June. This year, we celebrated WSD with a new campaign, “Be Bright, Be Blue”. Since the FESCA World Scleroderma Day theme this year is 'turning toward the sun', we decided to embrace this by encouraging everyone to wear their brightest blue to show support for individuals diagnosed with scleroderma and raise awareness of the condition. The theme ‘Turning toward the Sun’ was inspired by Paul Klee’s 1933 sunflower piece. We also had a presence at the Royal Free for our Be Bright, Be Blue campaign on 26th June, which was well attended by visitors, patients and medical staff.
and remains an impressive strength of the organisation.
On 3rd July, we held a WSD celebration and education event in Bath in partnership with the Raynaud’s and Scleroderma Association. The event was developed in partnership between the RSA and the Society, and had both patientfocused and clinician-focused content. We also launched an artwork competition this summer, and this newsletter is indeed based around the theme of creativity. We invited individuals to produce an artistic piece to symbolise what this year’s WSD theme means to them. Artwork was displayed at the WSD Celebration in Bath also at our annual conference on 19th July in London and features as the cover of this edition of Scleroderma News.
We are always very pleased to hear from anyone who wishes to volunteer for the Society in any way, be it from reviewing literature, running an event, becoming a trustee, offering a professional skill, or helping in any other way you feel you could offer. Amy Baker would be pleased to hear from you! Telephone: 020 7000 1925 or email: amybaker@sclerodermasociety.co.uk
Steve Holloway, one of the Society’s longest-standing and dedicated volunteers has recently resigned from his role as trustee, and we are sure everyone wishes to join us in thanking him for the incredible length of committed service and dedication he gave the Society for so many years.
Best wishes for a lovely summer, Love from
The Society is flourishing with fresh and modern ideas being introduced by our inspired and highly motivated team in the office, Amy Barrick, Amy Baker and Chloe Kastoryano, complemented by the outstanding efforts of all our volunteers as well, who continue to support the Society in so many ways, from the helpline, to local groups, to fundraising, and local events, or to participating in the review of literature, participating in research requests, and attending events on behalf of the Society. The number of volunteers giving their time and energy to the Society continues to increase
Susie x
Disclaimer: Views expressed in Scleroderma News are not necessarily those of the Scleroderma Society, nor the editorial Board of Scleroderma News. No responsibility or liability will be accepted, either for their contents or accuracy in Scleroderma News. Products, treatments and services on the website and in Scleroderma News are not necessarily recommended by the Scleroderma Society. The Scleroderma Society is not equipped to test and approve products, treatments and services available to the general public. Please exercise your own judgement about whether or not the item or service advertised is likely to help you personally and, where appropriate, take professional advice from your doctor, nurse, physiotherapist or occupational therapist before buying or trying something.
Scleroderma News: Welcome
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The Scleroderma Society AGM & Annual Conference A round up of the day’s highlights Thank you to all who attended this year’s AGM and Annual Conference. We are so pleased that so many of you were able to attend and found the day extremely useful and enjoyable. The theme of the day was ‘therapies’ and speakers included Consultant Rheumatologists Professor Chris Denton, Doctors John Pauling and Voon Ong, Professor of Clinical Rheumatology Jacob Van Lar and Consultant Nurse Rheumatologist Sue Brown. Due to popular demand we will be uploading speaker presentations to our website soon. Amy Barrick, Office and Administration Manager, said: “It was great to meet so many of our members and meet the scleroderma experts. Even though I don’t have scleroderma myself it was wonderful to take part in the interactive activities and to further my scleroderma knowledge. I am very much looking forward to next year’s conference and hope to see many of you at our next event!” “I learnt a lot and there was good humour”
“Good and relevant medical professional speakers”
“Very well run and very informative”
“Good range of topics”
Above, left to right: Paula Lovelock, Liz Holloway & Lorna Worboys Below, left to right: Prof. Ariane Herrick, Prof. Chris Denton, Prof. Jacob Van Lar, Dr. John Pauling, Sister Sue Brown & Prof. Voon Ong
Scleroderma News: AGM & Conference
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“I really enjoyed the conference and it was nice to meet people with the same condition as myself”
Above left to right: Royal Free Therapies Team & Changing Faces'Skin Camouflage Team In addition to the sessions we had an excellent variety of peripheral activities. These included Changing Faces Skin Camouflage Team and the Royal Free Therapies Team for complementary sessions on skin care. The Scleroderma Society’s Helpline and information teams were also present to answer any questions. Rosemary Goodwin, Helpline Volunteer, said: “I have been a volunteer on the Helpline since November 2012 and this was the first AGM and conference I had attended. Penny, another helpline volunteer, and I were available on the stand throughout the afternoon to answer questions and provide literature. Some have Scleroderma and others were seeking information on behalf family members. I found the conference speakers interesting, easy to understand and extremely informative, especially as so many helpline calls concern Raynaud's. Also, of particular interest was the work of the specialist Nurse. I often refer callers to them but I hadn't realised the wide range of knowledge and skills that they possess. I don't have Scleroderma but every call I take adds to my knowledge of the subject. I am always amazed
Scleroderma News: AGM & Conference
“Loved every second of it” by the wide range of symptoms and the extent to which they affect people. It's very rewarding, at the end of a call, to hear someone say "thank you, I appreciate your help". But actually I always feel that I should say it too, because every caller helps with my understanding of a very difficult and complicated illness.” A big thank you goes to the Royal Free for providing us with the Venue, our on the day volunteers Sonia Freeman and Jane Beach, Liz Holloway and Lorna Worboys for running the raffle, and the Society’s helpline volunteers: Penny Killingbeck, Rosemary Goodwin, Paula Lovelock and Helena Rozga.
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29th June 2014 was
World Scleroderma Day To celebrate world scleroderma day a variety of events were held throughout the week. On the 3rd July the Scleroderma Society held their first ever, collaborative event with the RSA in partnership with the Royal National Hospital for Rheumatic Diseases, Bath. This event was held in celebration of World Scleroderma Day and was an educational event for both patients and clinicians. The day was split in to two parts to allow for a positive learning environment with patients hearing about “What is Raynauds, What is Scleroderma?’ (Dr John Pauling), ‘What can I do to help my Raynaud’s and Scleroderma?’ (Sue Brown) and ‘ Current and future treatment options for scleroderma’ (Dr Victoria Flower). The clinician session, held in the afternoon, was by Dr Harsha Gunawardena, Dr Gerry Coghlan and Dr John Pauling. Dr Pauling was influential in organizing and hosting the event and stated: “I was delighted to see so many patients and family members took the opportunity to visit us in Bath
for the World Scleroderma Day Celebrations. It is so important to bring together clinicians and patients to share knowledge and experiences about Raynaud’s and Scleroderma. For many present, it was the first opportunity they had had to meet other people going through similar experiences of a rare disease. We couldn’t have delivered the day’s programme without the support of the RSA and Scleroderma Society who deserve special thanks for their hard work and support for the event. We thoroughly enjoyed hosting the event and would love to do something similar again next year.” Chloe Kastoryano (Project Coordinator) joint manager for the event stated: “It was an extremely successful event, highly informative and thought provoking. The speakers were excellent at engaging the audience and feedback has been excellent. We are extremely pleased with the outcome and are looking forward to subsequent joint events.’
This was the first year that we all became ‘Bright and Blue’ to celebrate World Scleroderma Day. We were delighted to see so many of you wearing blue during the weekend to show your support for diagnosed individuals. Salford Royal took ‘blue’ to the next level by taking a photo with a thermal imaging camera (left). Through wearing blue you raised awareness of this rare condition and awareness leads to better education and understanding of this condition. The weekend raised £1,537.08 through donations and events with more still coming in. Thank you to everyone who supported the weekend and your fundraising will be used to develop further support resources for individuals and their families. If you would like to top up this amount to give individuals diagnosed a better quality of life you can do this at: justgiving.com/BeBlue or by texting BLUE40 £5 to 70070.
Scleroderma News: World Scleroderma Day
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And the winner is… Inspired by Paul Klee Art Competition Thank you to everyone who took part in this year’s art competition entitled “Turning toward the sun.” We were really pleased with the amount of entries received and this led to a difficult decision for our judge, Alan Brain. Alan is an accomplished artist and teacher working within the field of abstract art.
This years winner Aspa Palamidas was invited to our annual conference to receive her first prize award of a £50 Cass Art Voucher.
Aspa Palamidas was awarded our first prize of a £50 Cass Art Voucher and her painting is the front cover of this issue. Aspa spoke of her painting: “ It’s a scene of the River Thames at Kingston, in loving memory of my husband George. George was particularly fond of the river and asked me to take our son there the day before he left us. I hope you see something in it too; it means a lot to us.” Megan Hewitt was awarded our second prize of a Cass Art goodie bag. Megan’s mum, Melanie, said, “As I have scleroderma along with lupus my daughter, Megan, wanted to do a poster. The idea was that I always feel better with the warmer weather so she thought if I flew up to the sun I would come down all better.” Megan was thrilled to be awarded second prize and even took her drawing and goodie bag to school for show and tell. We would like to say congratulations to our prizewinners and thank you to our sponsor Cass Art and to everyone who took part in this year’s competition.
2
nd
If you didn’t manage to take part this year, don’t worry, as we will be running another art competition next year.
Scleroderma News: Art Competition Winners
Aspa Palamidas photographed with her son and the winning artwork. And below, Megan Hewitt pictured with her mum and 2nd prize goodie bag.
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29th June 2014 was
World Scleroderma Day
Scleroderma Evening in Portsmouth 25th June 2014, Launch of Individual Personal Care Plan for Scleroderma Over the last few years the Rheumatology Department at Portsmouth Hospitals NHS Trust have been working closely with their patients and other healthcare professionals and support groups to develop Individual Personal Care Plans for a variety of rheumatological diseases.
selves? Personal Care Plans are written record that the patient takes ownership of and can be used in partnership with healthcare professionals to plan and record care. This document can also help support patients to self-manage and prompt them when to seek advice.
We proudly launched our Personal Care Plan for Scleroderma this week in conjunction with World Scleroderma Day.
The feedback from the pilot study of the Scleroderma Personal Care Plan was positive and all the patient in the pilot said that they would continue to use their care plan in the future.
This meeting was attended by patients and their family and friends (24 in total). We were also supported by Raynaud’s and Scleroderma Association and The Scleroderma Society. Did you know, individuals living with long term conditions spend approximately 3 hours every year with healthcare professionals ...the other 8,757 hours they look after them-
Scleroderma News: World Scleroderma Day
If you like to find out more about the care plan please contact the Scleroderma Society office. Paula White
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Summer’s Fundraising Stars Prudential Ride London – Surrey 100 On Sunday 10th August thousands of cyclists will be taking to the closed streets of London and Surrey to complete a 100-mile cycling challenge. The Prudential Ride London- Surrey 100 starts in Queen Elizabeth Olympic Park with a route winding through the city and into the stunning Surrey countryside. Cyclists will finish at The Mall in central London, shortly before 150 professional cyclists race in the Prudential Ride London-Surrey Classic. We will have a cheering point in the Surrey countryside half way around the course at Newland’s Corner where all supporters are welcome to join. But if you are in London we ask that you look out for the sunflower shirt and cheer on all of our cyclists on the day. The Scleroderma Society is delighted to introduce our six riders, taking part in the UK’s largest cycling challenge, Chris Nutland, David Pooley, Derek Fontinelle, Mike Dolling, Steven Henny and Victoria Bale:
Steven
Scleroderma News: Fundraising
Vicki My husband Martin Foley passed away at the end of last year having suffered for many years with Scleroderma of the small bowel and oesophagus. I went on the website to get an address for the Society and there on the home page was the call to ride the Prudential 100. I am a really keen cyclist and this was an ideal event for some fundraising in his memory. Our family have all been raising money, from curry nights to sponsored silences and we hope to raise between £3-4,000. I am so looking forward to the day, to be a part of such a huge event and to ride on closed roads will be a pleasure. It will be an emotional day, but one I hope I will always remember and I will wear my Scleroderma Society cycle shirt with pride and for Martin.
David Having been diagnosed with linear scleroderma and morphea when I was 11, I decided to take part in PrudentialRide100 to show that the uncertain future everyone with scleroderma faces does not always end in a negative way. There were times growing up when it looked like I might be physically disabled later in life, but as my taking part in (and hopefully finishing!) the Prudential Ride London shows, that has not been the case. Thanks to the amazing support I received from hospital workers and charities like The Scleroderma Society, I lead an active life, with very few restrictions. Hopefully I can give a bit of encouragement to other people with scleroderma, raise some money for a worthy cause, and raise awareness while doing so!
My wife, Alexandra, has Scleroderma and I have recently taken up cycling so this seemed a perfect way of saying thanks for all the support from the Society.
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The Belper Games 2014
“It’s a Knockout” On the 19th July I attended The Belper Games 2014. The Belper Games is a fantastic day out for all the family, with face painting, bouncy slides, tombola's and ice cream vans filling the fields but the main spectacle is the ‘It’s a Knockout’ competition.
19 teams took part in this years event, with teams fighting it out on giant inflatables, from hopping over a giant inflatable mountain to jumping across the field on a double space-hopper before diving in to a cube filled with foam. After battling through the challenges and the rain which stayed with us for most of the day, Blunsdon Babes (a group of local mums whose children attend St. John’s primary school) were crowned The Belper Games 2014 Champions receiving the coveted Belper Games 2014 trophy. Nick Wheeler organiser of the Belper Games said “The success of this event grows year on year, and we’re already excitedly planning next year’s event. Its success it due to a very small team of committed people giving up their own free time to organise it. It’s remarkable what a small group of people can achieve when they really want to, and when they have the memory of a wonderful wife, mother and friend to spur them on. It really is a day for everyone and the response from the general public astounds us each year, and it’s only going to get better!” The Belper Games are held each year in memory of Penny (Nick’s wife) who was diagnosed with scleroderma and unfortunately lost her battle with the disease. The Scleroderma Society had a wonderful day at the event and even met two of our members. We cannot wait to see what next year has in store. Thank you to Nick Wheeler, Kate Hall and Megan Wheeler for making this event such a wonderful success and Jim and Kerry Bull who have teamed up with Penny’s fund to raise for Ataxia UK. Special thanks to: Sandra and Steve Matthews, Simon and Janet Blount and Tom Hallam at Belper Rugby Club. Pauline Latham OBE MP for her continued support both during Penny’s illness and after. The committee is hoping to match last years fundraising total of £12,000. The Scleroderma News will feature the final fundraising total in a future issue alongside the date of next years games and how to get involved.
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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In the Bathroom: Hot Tips The bathroom is part of our daily routine but when you have scleroderma it can become a very difficult part of every day life. But with Helena’s top tips, we are about to make your bathroom routine much easier. “I find it useful to use a wash mitt, exfoliator or long handled bath brush if contractures of the hand make it difficult to grasp things particularly flannels.” “Chubby handled toothbrushes or better still an electric toothbrush, toothpaste tubes with large caps instead of those fiddly little twist caps and flossing brushes or a handled dental flosser if like me you have a small mouth opening or you cannot grip dental floss.”
“My hot tip for cleaning the bottom of your feet in the shower. Stand on a large soaped and wet flannel and whilst holding down with one foot wipe the other foot back and forth until clean. Use a long handled bath brush for cleaning the toes!” “I use a rubber chubby handled brush and comb. If like me you find it difficult to blow dry the back of your hair and you cannot ask someone else to do it for you then the self grip rollers are great to use on the hair at the back of your head. Remember to take them out when leaving the house! I was once asked what was that at the back of my head, only to find two bright red rollers. While we’re talking about funny situations I once put my dress over my head, forgot I had a couple of rollers in and went out with them on the back of my dress where they had self gripped!”
IMPRESS 2 Study: International Multicentric Prospective study on Pregnancy in SSc Patients with systemic sclerosis who plan a pregnancy for the year 2016 may be interested in participating in an international observational prospective study initiated by EUSTAR.
If you are interested or would like to find out more please contact: info@sclerodermasociety.co.uk This project is supported by FESCA and EUSTAR.
Since very few studies have included large numbers of pregnant patients and followed them during and after pregnancy, a number of important questions remain open and need more extensive study.
Some of the questions to be studied: Does pregnancy alter the course of SSc? Are different forms of SSc influenced differently n pregnancy? How would SSc be monitored during pregnancy?
To answer these important questions, a 2 year observational study of pregnant women with SSc will be conducted with the aim of studying 100 pregnancies in SSc women.
Scleroderma News: Hot Tips & Pregnancy
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Promising New Treatment : The Results Are In! Back in the days of Black&White Photography, when our trusty computers started misbehaving, they were subjected to the infamous Three-Finger Salute known as Ctrl-Alt-Delete or “System Reset”. Well, the medical equivalent of this could be considered to be Autologous Haemopoietic Stem-Cell Transplantation or HSCT for short, where the basic idea is to shut down the body’s immune system and rebuild it again from scratch. This procedure has been used for quite some time now in the treatment of cancer, so that the technology for using it is well established; but it was not until 1997 that treatment was first given to scleroderma sufferers. So this conference has been fortunate indeed to have Professor Jacob van Laar present the final results of a 12 year trial he has conducted, commencing in 2001 and involving 156 patients with recently diagnosed diffuse cutaneous sclerosis. It has compared the 4 year outcomes of one group receiving HSCT and a control group receiving the then current treatment of choice, cyclophosphamide. Having described the mysterious proce-
dure that is HSCT, Professor van Laar proceeded to show us the graphical highlights of the trial, with the HSCT results significantly outperforming those of cyclophosphamide. These charts were comparing the number of events (death or organ failure) on an ongoing year on year basis, with the overall score for HSCT being 22 events versus 31 for cyclophosphamide, a substantially significant improvement. What was also very interesting about these numbers was that for the first year, cyclophosphamide was actually rather better (8 v 13 HSCT) with the HSCT results greatly improving during years 2 through 4 (23 v 9 HSCT) One other very interesting observation about these results was that smokers represented some 70% of the overall fatalities. In conclusion, Professor van Laar said that although the cost of HSCT has dropped from some £100K to nearer £40K, work still needs to be done to identify those patients at first year risk from an HSCT procedure. Ctrl-Alt-Delete the immune system, to fix Scleroderma ...why didn’t I think of that! Roger Sinclair-Clarke
DOC SPOT Chris Denton is a Professor in the Centre for Rheumatology at the Royal Free Hospital in London and runs the Scleroderma Clinic. His major research programme spans both clinical and laboratory Scleroderma trials. I am lactose intolerant, what are the alternatives to medication in tablet/ capsule form? Are these readily available? You should discuss this with your pharmacist as there are generally forms of most common medication that do not contain lactose including tablet, capsule and liquid forms in many cases. The tops of my hands are very itchy and I get tiny hard spots, which are not visible but I can feel them...also the tops of my feet, top of big toe and around my ankles are very itchy too no spots but sometimes it looks like I have a nettle rash on the top of my toe and also 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 urticaria and so if this is a severe and persistent problem you should consult your doctor as a specialist dermatology or rheumatology referral might be appropriate.
My scleroderma took a long time to diagnose as it only showed up on scans and not with blood tests. Is this always the case?
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.
Since scleroderma is uncommon and can be very different in pattern or extent, sometimes with only mild skin changes, it is not unusual for diagnosis to take some time, especially in milder or atypical cases. Many doctors only see a very few scleroderma cases in their clinic and naturally focus first on commoner diagnoses. Eventually most (more than 90%) patients have abnormal blood tests, especially antinuclear antibodies (ANA) but these may take time to develop.
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 monitoring blood test and 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.
Scleroderma News: Doc Spot & Treatment News
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A Look at Complementary Therapy The Complementary Therapy service for patients was started at the Royal Free in 1992, by Keith Hunt MBE, as a voluntary massage service for referred cancer patients. Keith expanded the service considerably and became the full-time paid coordinator for Complementary Therapy, leading a team of qualified therapists which includes permanent staff and volunteers.
All patients, with any medical condition, can be considered for treatment from the team. Complementary therapy is not used an alternative to conventional treatments but is offered alongside. Massage Therapy is offered by the Royal Free Hospital Complementary Therapy team. The intended benefits of this therapy are to promote relaxation, reduce anxiety, and to ease
symptoms such as pain, nausea and poor sleep patterns. Help with your coping strategies. If you would like to find out more about the team visit: https://www.royalfree.nhs.uk/services/ services-a-z/complementary-therapy/
Exclusive Discounts for Scleroderma Society Members The Style Angel Personal Shopping Service With a Difference The Style Angel is a personal shopping service designed with you in mind! Helping you to build a look that suits you shape, lifestyle and budget. Advice on new looks and current trends and what to wear to look to feel great! Half day or hourly sessions available. Exclusive 20% discount for all Scleroderma Society members with code sclero714
Veil Cover Cream Exclusive 20%Discount for Society Members Veil Cover Cream was first formulated in 1952 and was pioneered to be used to cover post-operative scars, now “our cover cream is widely recommended in hospital dermatology and skin clinics as well as leading beauty salons” (Veil Cosmetic Camouflage). Read about Alexandra Marler who tested cover cream as part of the
Scleroderma News: Treatment News
#veilchallenge on Veil’s website: http://www.veilcovercream.com. An exclusive 20% discount is available for all Scleroderma Society members, this discount is valid until the 31/08/14. Claim your discount by using the code VCCSC14 online.
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Competitions
& Local Support Group News
Enter The Stene Prize Competition and WIN €2 000! We invite people with rheumatic and musculoskeletal diseases (RMDs) to write about their personal experiences and the role that health professionals have played in supporting them to live as independently as possible, achieve important personal goals, and to take control of their lives. We want to hear all your stories. What have you been able to achieve and how? Each small step counts and we look forward to hearing many inspirational stories. In this context, health professionals may include your nurse, your primary care doctor, your rheumatologist and other specialists, your physiotherapist, your psychologist, in brief any health care team around you. We would also like to hear what could be improved in your country and if you have access to all the health professionals you need. What should an ideal relationship between health professionals and people with RMDs look like?
East Anglian Group News Our next meeting is on Saturday 30 August 2014 at 2.45 pm in Felixstowe. We will be looking at ‘Understanding and Managing Scleroderma’, the Scleroderma Society publication. As we mostly meet in this area of Suffolk, we are effectively a Suffolk Group but we know there are now quite a lot of people with scleroderma in Norwich and the surrounding area. If you would be interested in a get together in Norwich, would be prepared to organise it or can offer accommodation. Please contact Jacky March on 01394 286 637, if you would like more information.
If you have any news you would like to share with members of The Scleroderma Society, please do not hesitate to email them to: info@sclerodermasociety.co.uk
Break Time
The Stene Prize winner will be invited to attend the Opening Plenary Session of the EULAR Congress in Rome to be awarded their prize of € 2 000. EULAR provides the winner with travel to Rome and hotel accommodation in Rome for up to 4 nights as well as an invitation to the Congress Dinner. Deadline: Monday 15 December. To find out more or to enter please contact the office.
Newcastle Group News I'm very pleased to tell you that Lindsay Wilkinson has agreed to cover Newcastle & Northumberland as a local Group Contact for the Scleroderma Society. She was first diagnosed with morphoea & Rayaud's in her early 20s but wasn't diagnosed with systemic scleroderma until 2010, having previously been told she had ME. Lindsay has not been able to work for a while but is hoping to be back in employment once she has completed retraining as an Adult Education teacher. Good luck in the future, Lindsay, & many thanks for joining the team. Newcastle area, check out Lindsay on the Newsletter Contact list.
Can you solve the riddles? CREATIVITY What invention lets you look right through a wall? NOT MUCH OF A SPORT What can you catch but not throw?
LIGHT AS A FEATHER What is as light as a feather, but even the world's strongest man couldn't hold it for more than a minute?
A simple way to show your support this Summer! The Scleroderma Society has adopted the sunflower to represent our organisation, sunflower pin badges are available for a small donation, to buy one please visit our website or contact the office.
Scleroderma News: Local Group News & WIN!
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Notice board Local Contacts and support services Local Group Co-ordinator: Liz Holloway liz@sclerodermasociety.co.uk, 01243 539466 Bedfordshire Rita Boulton rita@sclerodermasociety.co.uk 01767 312 544 Buckinghamshire & Hertfordshire Marilyn York marilyn@sclerodermasociety.co.uk 07702 592 387 Burton on Trent Helen Nutland helen.nutland@sclerodermasociet y.co.uk 01283 566 333 x5247 Cornwall Alex Pooley alex@sclerodermasociety.co.uk 01736 755 845 County Durham & Teeside Jessie Pickering 01388 527 840
Derbyshire, S.Yorkshire, Staffordshire & Cheshire Lynette Peters lynette@sclerodermasociety.co .uk 07947 350 815 Derbyshire, S.Yorkshire, Staffordshire & Cheshire Diana Twigg diana@sclerodermasociety.co.uk 01298 24 539 Devon Anne Sheere anne@sclerodermasociety.co.u k 01752 338 156 East Anglia Jacky March jacky@sclerodermasociety.co.u k 01394 286 637
East Midlands Cheryl Darch cheryl@sclerodermasociety.co.uk 01162 717 180 East Sussex Rosanna Clifton rosanna@sclerodermasociety.co.uk 01424 426 738 East Yorkshire Lynn Hind lynnh@sclerodermasociety.co. uk 01482 354 312 Essex, Kent & East London Amanda Thorpe amanda@sclerodermasociety.co.uk 01702 344 925 Hampshire Tracey James tracey@sclerodermasociety.co. uk 02392 677 476 Ireland Michelle McGill michelle@irishraynauds.com 08183 63 999 Lancashire & North West Yorkshire Sheila Procter sheila@sclerodermasociety.co.uk 01282 42 9004 Merseyside Helen Lingwood helen@sclerodermasociety.co.uk 01512 801 194
Newcastle and Northumberland Lindsay Wilkinson lindsay@sclerodermasociety.co.uk 07880 238 213 North East Scotland Susan Wilson susan@sclerodermasociety.co.uk 07740 185 627 North Wales Kate Owen kate@sclerodermasociety.co.u k 01492 515 834 Oxfordshire & Berkshire Melanie Bowen melanie@sclerodermasociety.co.uk 01865 517 033 Powys & Shropshire Jennifer Ames jennifer@sclerodermasociety.co.u k 01544 267 988 Scotland Frances Bain frances@sclerodermasociety.co .uk 0131 477 1122 Somerset & Gloucestershire Judith Foster judith@sclerodermasociety.co.uk 07985 335 336 South London Celia Bhinda celia@sclerodermasociety.co.uk 020 8698 6294
South Wales Belinda Thompson belinda@sclerodermasociety.co.uk 02920 625 056
Surrey Nicky O'Shea nicky@sclerodermasociety.co.u k 01483 764 524 West Midlands Jane Beach jane@sclerodermasociety.co.uk 01527 459 552 West Sussex Lesley Dodd lesley@sclerodermasociety.co.uk 01903 753 971 West Sussex Jo Frowde jo@sclerodermasociety.co.uk 01403 741 445 Wiltshire & North Hampshire Lynn Morton lynn@sclerodermasociety.co.uk 01980 863 444
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 forums a go? Have a look around, meet and support other people with Scleroderma.
Inspirational Quote of the Season “Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.� - Helen Keller, American Author. Scleroderma News: Notice board
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Contacts Connecting you to Scleroderma Professionals, groups and nation wide support networks Susie Hoare susie@
Specialists
sclerodermasociety.co.uk
Newcastle Freeman Hospital Scleroderma
sclerodermasociety.co.uk
Bath Royal National Hospital for Rheumatic Diseases: Sue Brown 01225 428 823
Office & Administration Manager: Amy Barrick
Belfast Ulster Hospital: Audrey Hamilton
020 7000 1925, amy@
02890 561 310
01912 137 418
Dundee Ninewells Hospital: Steve McSwiggan
Portsmouth Queen
Helena Rozga Helena@
sclerodermasociety.co.uk Helpline Manager: Helena Rozga, Helena@ sclerodermasociety.co.uk Event enquiries: Amy Baker, fundraising@ sclerodermasociety.co.uk Specialist Nurses: Nurse led lines for general inquiries only, in non emergencies. If the nurse is unavailable please leave a message:
01382 383 233 Leeds Chapel Allerton Hospital: Elizabeth Tyas 01133 923 035 Liverpool Aintree University Hospital: Jan Lamb 01515 255 980 bleep 2231 London Royal Free Hospital Scleroderma queries: 020 783 02326 and Pulmonary
queries: Karen Walker 01912 231 503 and Pulmonary hypertension: Rachael Crackett / Julia De Soyza
Carer Support Contact: Michael Thorpe 01702 344 925, MTDAAC@live.co.uk
Write to: The Scleroderma Society Bride House, 18-20 Bride Lane, London
Alexandra Hospital: Paula White / Julie Ingold
EC4Y 8EE
02392 286 935
Phone us: 020 7000 1925
To find more specialists in your area visit the website or contact the office.
hypertension: 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.
Scleroderma News
Email the editor: Hollie@scleroderma society.co.uk Proof Reading: Rosemary Goodwin
020 7472 6354 London Royal Brompton Hospital Respiratory
Printing & Publishing: Jarvis & Company
queries: Lucy Pigram 07758 894 3175 Manchester Hope Hospital: Liz Wragg and Catherine Lambe
01612 060 192
The Scleroderma Society is a registered charity: 286736 Scleroderma News: Contacts
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