Spring Newsletter 2012 by Scleroderma Society UK

The Scleroderma Society Charity Registration No. 286736

Scleroderma News Meet Mike Rich, Our First Chief Executive

T Special points of interest:  Medical advice  Research progress  A decade of memories  Reports from the regions

Inside this issue:

Report from Madrid Congress

Health advice from Louise Parker

Fund raising efforts

Memories of the 1990s

Put Your hands up for WYGWD

Liz and Steve retire from the Hampshire group

EULAR

Wear Your Gloves To Work Day 29 June

he Scleroderma Society has been successfully run and managed by volunteers for the past 30 years. Recently, the organisation was left a legacy which the Trustees decided should be used to move the Society forward to develop more and better services for people with scleroderma, increase the amount of money we raise to help fund research and to campaign for greater awareness of scleroderma. The first step in this programme was the decision to employ our first member of staff, a Chief Executive. We have now taken this step and appointed Mike Rich. We asked him some questions so our members could get to know him. My background I have had a varied career working as a fundraiser, in public affairs for children’s charities and others in the sector. For the last decade I have worked for health charities. I was the Chief Executive for the maternity charity Action on Preeclampsia and then for the Blood Pressure Association.

Professional achievements When I was at Action on Preeclampsia, I worked with obstetricians and midwives to develop treatment guidelines which have made a real, positive difference to the experiences of pregnant women. At the Blood Pressure Association we

Society and the work it does. I am still astonished at what the Society has achieved over the years. It really is a testament to the hard work of the many volunteers involved. Sustainability is another challenge. These are difficult times for us all and money is increasingly hard to find. However, the Society is in a strong position to go from strength to strength. Charities and the recession

A warm welcome to Mike Rich

introduced a community outreach programme to deliver heart health checks to people often excluded from mainstream healthcare. It is important that charities do not lose sight of the fact that they are dealing with, first and foremost, individuals. Relaxation & leisure interests I am married and have four children aged between 18 and 5, so family activities (running them around!) take up a lot of my time. I am kept busy as a trustee of the Firefighter’s Charity. Challenges for the Society The key challenge for the Society is awareness. Awareness of scleroderma amongst a wider audience, including the public and health professionals, and then an awareness of the

Turn to pages 7 & 12 for more on WYGWD © Scleroderma Society 2012

These are difficult times for all charities but they have been especially fraught for smaller organisations. This is also a time of opportunity for smaller charities like ours. Developments in new technology and the expansion of social media have made it possible for smaller organisations to have an influence far beyond their size. Today it is possible to distribute information, campaign and respond to the needs of people very quickly and very efficiently. Being “nimble on your feet“ makes all the difference and the way the Society has been managed shows that. Over the next couple of months I will begin a healthy dialogue with members of the Society to see how you want to move things forward and what you want the Society to be doing. I look forward to talking to a lot of people and hearing their opinions.

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A Warm Welcome From Richard I love spring, and autumn for that matter. Summer I spend worrying about the heat and winter about the cold, so it’s spring and autumn when I can relax, enjoy the weather and be grateful I live in a country with a mild climate.

Richard Dodds, Trustee

It’s not just the weather I’m feeling grateful for. In February I attended the second world Scleroderma Conference. Not only inspiring, the conference made me think about how lucky we are to have free access to good healthcare. Things may not be perfect, there may be threats and

inconsistencies but we have a world-class system which many can only dream about. Many people living with scleroderma carry on their lives with very little support. While few would want the condition to take over completely, a strong patient organisation in the background providing information and support when needed is a great advantage. Since joining the Society I have been amazed by what our volunteers have achieved over the last 30 years and the range of information and support that is available. With the

appointment of Mike, the Society’s first Chief Executive, comes the opportunity to expand the services that the organisation provides even more. Preparations are also well underway for our first Wear Your Gloves to Work Day, a fundraising day to support World Scleroderma Day on 29 June. It should be fun and a good way to help raise both money and awareness about scleroderma. All in all many reasons to be cheerful!! Richard Dodds Trustee

Helena says she

World Scleroderma Congress , Madrid February 2012

learned a huge

We touched down at a foggy Stansted at 7.15pm on 5 February on a snow-covered runway, tired but extremely thankful not to have been delayed. Writing now I am actually snowed in, with time to reflect on attending the Second Systemic Sclerosis World Congress in Madrid. Expecting cold winds and temperatures of 2C meant I had packed layers of clothing, hat, gloves and handwarmers. It was very different to feel the cold in the sunshine.

amount in Madrid and invites you to “Come and hear physiotherapist Will Gregory at our AGM and conference in July.”

I felt privileged to go to the Congress but had no idea what I might experience or how encouraging it would be. There were 1,143 participants, of whom 261 were representatives, patients and family from 30 countries, double the numbers in 2010. There were 43 countries represented, and 306 abstracts were submitted - amazing! Helena Rozga, Trustee

As I have scleroderma I was able to attend the “Scientific” and “Patients’ ” programmes. Both were extremely

informative. The Scientific programme was the platform for the “experts” to present their research and findings on their medical and scientific advances on stem cell transplantation, organ function and quality of life, the gut, the heart, the lungs etc. I followed the broader concepts, but not the analysis and statistics. However, it was evident that the experts shared and collaborated to further knowledge in the field of Systemic Sclerosis. The consistent confidence of the professionals in these indices and trends should evolve better awareness, understanding, diagnosis and support. The patients’ programme was just as stimulating, extremely relevant, and presented in layman’s terms by the same experts with technical data and in percentages and visuals that I understood. There were scleroderma specialist speakers and patient speakers from all over the world. The UK was

well represented by its professionals with a lively ‘Doc Spot’ question and answer session led by Professor Chris Denton. Everyone appreciated his focussed, relevant and informative answers. There was also another excellent presentation from the UK by Physiotherapist, Will Gregory (Salford, Leeds) who talked expertly and with great empathy on the importance of exercise in coping with scleroderma. I learned a huge amount and made seven A4 pages of notes. The nutritionist told me 100 gms of chocolate per week was good for me! I would like to thank our hosts in Madrid. A big thanks too to the professionals and volunteers for making this a truly memorable experience and for their dedication in helping to make our quality of life better. Lastly, thanks to FESCA for organising the programme for people with scleroderma. Helena Rozga, Trustee

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More from Louise Parker at the Society’s 2011 AGM Conference

ore from Louise Parker, Lead Nurse in connective tissue disease, at the Royal Free Hospital, London, who spoke at our 2011 AGM about the questions frequently asked in systemic sclerosis. Thank you, Louise. PLEASE NOTE: Louise suggests it is important to remember that everyone is different and that symptoms vary from person to person. They occur at different stages and they occur in varying degrees of severity; no two people are affected in exactly the same way

What is Raynaud’s and what are its treatments?

What joint problems are common in systemic sclerosis and how can they be treated? Aches and pains are common but are not usually the result of a true arthritis in most people with systemic sclerosis. In the early stages of the disease, excess tissue inflammation causes stiffness e.g. the person may be unable to make a fist, and may have contractures and pain. For hands, there are exercises, which should be done early on and regularly. Hand waxing can be soothing and should be done often. The Physiotherapy & Occupational Therapy team have advice and aids to help you.

What can you do to help the symptoms of a dry mouth? There are now better treatments available than previously, such as gels, pastilles, sprays, mouthwashes, sugar free gum and also just sipping water. If you have a dry mouth, it is important to check that a medication you are taking is not the cause. It is also important to have a regular dental check-up and if necessary, it is possible to be referred to a specialist unit. For problems with oral ulceration, Ad-cortyl ointment can be helpful.

Raynaud’s is an abnormal sensitivity to the cold and attacks are painful. The blood vessels constrict or narrow in response to cold or to emotional upset and stress. This disturbance in circulation causes a series of colour changes in the skin: white, blanched, or pale when circulation is reduced; blue as the affected part loses oxygen

from decreased blood flow; and then red or flushed as blood flow returns and the affected skin re-warms. When the attack is over, In the “white” or “blue” stages, sensations such as tingling, numbness and coldness may be felt. In the “red” stage, a feeling of warmth, burning or throbbing may be noted. Raynaud’s affects hand function and needs to be controlled as much as possible.

Avoid stressful situations. Use simple, practical approaches, such as hand warmers and warm clothing to keep warm. Keep your environment at a constant temperature to keep your body core warm. There are natural therapies such as GLA (gamma-linoleic acid), Ginkgo Biloba and ginger, as well as drug therapies, such as Losartan, Diltiazem, Fluoxetine, and in more severe cases, IV Iloprost.

What can you do to help with dry eyes?

What can you do to help fatigue?

If you have dry eyes, you need to protect your eyes and avoid direct draughts (e.g. in the car). To treat mild problems, you can try Liquifilm, or other dry eye drops, which are available over the counter. For severely dry eyes, there are treatments like Viscotears, gel tears, and Lacrilube which can be used at night. There are plenty of different ones to try if one doesn’t work for you.

Fatigue is common early on and throughout the disease and can occur in flares. If you experience fatigue, it is important to eliminate other causes such as anaemia. Fatigue can reduced once your condition has stabilised. It is a good idea to learn time management strategies and pacing.

There are many other problems that have not been mentioned here, so if there are other things that affect your work/social life, affect your appearance/confidence, or cause frustration and upset, you can phone us on the Specialist Nurse Advice Lines. Our team aims are to provide support and reassurance, disease and drug information, education and advice along with practical help. You will find the phone numbers in the Contacts list on page 9.

Louise Parker, Lead Nurse in connective tissue disease at the Royal Free Hospital, London

Finger exercises Practice making a fist and then stretching all your fingers out like a star. Touch each one of your finger tips with your thumb tip. Now gently slide your thumb tip down the side of each finger. With your hands face down on a table lift each finger up in turn.

Get your copy of The Scleroderma Society’s leaflet ‘The Fingers in Systemic Sclerosis’ at ww.sclerodermasociety.co.uk

Gloves Galore!

Have you chosen your gloves for WYGWD on 29 June?

or contact the office on 020 7000 1925

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Good Luck to all our Marathon runners

he long months of dark and cold winter training have drawn to a close for the Society’s marathon runners who are prepared and fit to take on the challenge of running 26.2 miles. This year there are ten brave souls pounding the pavements for such a great cause; nine (Ally, Gary, Matt, Rob, Kevin,

Jim, Amy, Stephanie and Susie, will be running in the London marathon on 22nd April and the tenth, Lee, will be flying the flag for the Society in the Brighton marathon one week earlier. Between them all, they have run about 6,000-7,000 miles in training since January!!! They’ll all don the blue Society running vests to raise as much

awareness as possible, and we hope they’ll all wave madly at the TV cameras! Let’s wish them loads of luck for the big day and send our thanks for all the time and effort they and their families have invested into their training and fundraising activities. We look forward to hearing the post-race reports from them all! Susie Hoare, Trustee

Skin Camouflage Service transfer to Changing Faces

Emma Noble Team Leader at the Princes Trust in Kirkintilloch sent a cheque to the society for £549.97 which the young people on her Princes Trust team number 12 raised through another bagpacking day in Asda. They are Laura Day, Suzanne Banks, Karen Lai, Lynn Gilbert, Kayleigh Mackie, Laura Wylie and Connor McFadden. Thanks to all for raising awareness as well as the super sum of £549.97.

Karen Cook on the left at her 60th birthday party.

The Red Cross has been working closely with Changing Faces, the leading not-for-profit organisation supporting and campaigning on behalf of people with conditions that affect their appearance, to agree the transfer of the skin camouflage service and both organisations are really delighted to have found such a good fit for this exceptional work. Within Changing Faces, the service has an exciting future as a key aspect of the range of provision in a charity where all the work is focussed on the lives and experiences of

people with conditions that affect their appearance. It will receive the attention needed to develop to its full potential so offering the best possible service to the beneficiaries and our NHS partners. We are delighted that almost 100% of the current Red Cross service volunteers have now transferred their skills and experience to Changing Faces ensuring people will continue to receive the same high quality skin camouflage advice they need now and into the future. The formal transfer to Changing

Faces took place on 14 November 2011 and clinics have been phasing over as we continue to work together to ensure a smooth handover both nationally and locally. Changing Faces will have full management responsibility for all skin camouflage clinics and volunteers across the UK from 29 February 2012. More information may be obtained from the Changing Faces website www.changingfaces.org.uk/Skin -Camouflage or by phoning their dedicated phone number 0300 012 0276.

Our Fantastic Fundraisers in Action Cakes Galore!

Christmas Sparkle!

There were cakes galore on the 5 February Karen Cook and friends raised £200 at her 60th birthday party. The array of cakes looks mouth-watering! Many thanks go to Karen and friends for all the hard work for The Scleroderma Society. Not only were you all stars at fundraising but it looks like you had a great time too.

Yvette Saggers organised a Christmas Sparkle Evening in November, with lots of stalls. She sold mulled wine and mince pies and raised £450. Yvette thinks that was “not bad for 2½ hours work”. We think that was fantastic but we bet it took a great deal longer to organise. Great idea for next Christmas!

A Chance to Support Fundraising Gary Harding is holding a charity fun/golf day (that is, fun for anyone watching him trying to play) on the 31 March at the Garronds Golf complex in Southend. Visit his page to support his efforts at http://www.justgiving.com/GaryHarding42 © Scleroderma Society 2012

Not Forgetting….. Brigid Hemingway has sent another £250 from concerts in the South Manchester area and a £20 cheque from a pupil. Sonya Sinclair in Caithness has collected £60.95 since January this year from sunflower pins and two collection boxes. Katrina Blythe organised a concert late last year in Sunderland, collecting £68.51. Bill Wood’s grandson, Stuart, ran in the Liverpool marathon. Stuart took the place of friend, getting blisters on the soles of his feet as his reward. True dedication to fundraising!

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Future Drug Targets for Scleroderma

are interested in identifying strategies that block the fibrosis (scarring) seen in scleroderma. Most of the antiscarring drug targets currently being considered for fibrosis are involved also with normal tissue development and maintenance. We work on the protein CCN2, which is specifically expressed in scar tissue. Thanks to the funding from the Scleroderma Society, we have been able to directly evaluate whether CCN2 is required for skin fibrosis. We have used two different models of scleroderma: one, in which scleroderma is caused by

application of the drug bleomycin, the other, in which scleroderma is caused by the genetic deletion of a gene called PTEN. We have shown that loss of CCN2 causes resistance to fibrosis in either model system. We have also shown that CCN2 is not required for skin development, homeostasis or tissue repair. We therefore think that CCN2 is a good target for antifibrotic therapy in scleroderma. CCN2 is a member of the CCN family of matricellular proteins. Thanks in part to funding from the Scleroderma Society, we were able to hold a specialized meeting in Vancouver, BC,

Canada in September, 2011 to discuss how strategies aimed at targeting CCN2 (or the other members of the CCN family) in diseases such as scleroderma. Principal investigators and trainees came from all over the world, including Australia, Professionals and The Scleroderma Society Japan, Netherlands and the UK. work together to support our members Neutralizing antibodies and antisense molecules targeting CCN2 are currently under The AGM and Annual development for fibrotic Conference of the disease; the overall consensus Scleroderma Society takes emerged that CCN2 is a good place on 14 July 2012. target for drug intervention Book a place or arrange a including in scleroderma. Andrew Leask, PhD Associate Professor Division of Oral Biology

Hamburg Childhood Scleroderma Symposium and Consensus Meeting December 2011 The Hamburg Scleroderma Symposium provides an update on research and clinical practice in childhood scleroderma. This annual meeting is attended by doctors from across Europe and the USA. One of the highlights from the programme this year was by Professor Torok from the University of Pittsburgh in the USA, regarding a skin score her group have developed for measuring how active skin disease is in children with localised scleroderma (the most common form in children). This skin score can be used to assess whether

children are responding to treatment and help aid decisions about when treatments can be safely stopped. Part of the meeting involved a practical session within small groups allowing hands on experience of using skin scores to assess children with scleroderma. I was invited as the UK representative to a consensus meeting held during the symposium to identify minimal standards of care for children with scleroderma across Europe. This was attended by experts in the field of childhood scleroderma and included Paediatric Rheumatologists and

Paediatric Dermatologists. The outcome of the meeting will be published in the near future. Some of the difficulties discussed at the meeting were the differences in healthcare provision across Europe and this had to be addressed when agreeing the minimal standards of care. The aim is to provide a more uniform approach to children with scleroderma and improve the quality of care they receive.

vote by proxy.

There’s still time to click on to Just Giving and help our marathon runners in raising funds for the Society.

I would like to thank The Scleroderma Society for awarding me a travel bursary to attend this meeting. Dr Clare Pain Senior trainee doctor Paediatric Rheumatology

Our Leaflet on Childhood Onset Scleroderma Translated into Italian We know from your feedback that the Society’s leaflets are well-received and useful to you. Recently we were approached by an Italian systemic sclerosis society for permission to translate our

leaflet on ‘Childhood Onset Scleroderma’ into Italian. They are a non-profit association for patients affected by systemic sclerosis and their families. Permission was willingly given

and our new Italian friends have set about the work. Collaboration is the key in scleroderma and we are all working for the same aim to help people with the condition.

Good luck to Jason Burgh who will spending most of his spare time in June in the gym cycling 600 miles raising funds for The Scleroderma Society. Hope you like the inspirational picture of Coast to Coast 2011

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Smiles from the 1990s Pam Webster recalls an incident with her grand daughter. “My grandchildren make honest remarks about my looks. Recently, Suzie had just returned from holiday and was on my lap hugging me and telling me all about it. She suddenly asked “Why have you got all those ‘scrunchy grunchy’ lines round your mouth?” I made a comment about getting old but had to smile at her choice of words. She then said “ Look! They all go when you smile.” So if you see me walking around with a permanent smile on my face, you’ll know why”. October 1993

The Art of Smiling A smile costs nothing, but gives much. It takes only a moment, but the memory sometimes lasts forever. No prizes for naming these two smilers. (It’s Kim Fligelstone and Liz Holloway)

None is so rich or mighty that he can get along without it, and none is so poor but can be made rich by it. A smile creates happiness in the home, fosters goodwill in business, and is the countersign of friendship. It brings rest to the weary, cheer to the discouraged, sunshine to the sad, and it’s nature’s best antidote for trouble. Yet it cannot be begged, borrowed or stolen, for it is something that is of no value unless it is given away. Some people are too tired to give you a smile—give them one of yours, for no-one needs a smile so much as he who has none to give. Jean Carr, January 1995

Cleaning Carpeted Stairs

Use the Society’s

Equipment:

own FaceBook

Sponge, small basin of water, paper bag Method:

page to publicise Wear Your Gloves to Work Day.

Start at the top. With moistened sponge wipe the stair using a sweeping motion. All the dust and hairs will collect on the sponge or side of stair. Put these in the paper bag, move down a step and repeat the process. A moistened rubber glove will achieve the same result. Run your gloved fingers over the carpet and the fluff etc. will collect together. Nan, 1990

Helpful Hints for Ladies Louise, 1991, had a tip “ for ladies only”. She wrote: “Sometimes with scleroderma, as with ageing, the lip line can lose its shape. Continue dusting with powder over the lips and then define the shape of the mouth with a lip pencil (or brush) just OUTSIDE the natural lip line. Use a shade darker than the lipstick you wish to use. Now use lipstick to ‘fill in’ and finish with a lip gloss over the lipstick for extra shine. Pale, glossy shades will make thin lips better. Also, practice the outline to develop a steady hand.

Layman’s Medical Terms

Artery: The study of fine paintings Colic: A sheep dog Coma: A punctuation mark Fester: Quicker Morbid: A higher offer Nitrate: Lower than the day rate Node: Was aware Outpatient: A person who has fainted Post operative: A letter carrier Secretion: Hiding anything Urine: Opposite of you’re out Australian friends 1991

Ways to Rest and Play in the 1990s

Steve Holloway in a 38’ cruising yacht, racing for The Scleroderma Society with a colleague in 1990.

Liz Holloway reported in 1990 on Steve’s sponsored sail: “The Yachting Monthly Triangle is a long-distance short-handed sailing race from Torquay to Cork to Brittany and back to Torquay and takes two weeks. The race is held every two years and this year was described as ‘rough and tough’. The boats left Brittany for the final leg in Force 7 wind. The whole two weeks proved exciting and enjoyable. Steve raised £800.

Louise suggested doing a jigsaw puzzle because it’s absorbing and relaxing. Having just popped home at lunchtime to spend half an hour on a new 1000 piece puzzle, she realised when the room went dark that she had been working on it for 9 hours. Marion Last may have been more energetic because she played both badminton and bowling. Her husband adapted

the racket handle and her sonin-law made a bowling ball holder. Nan Bridgewater began with recommending walking her farfrom-pedigree chum, especially as the dog was more persistent than all her wonderful physios. Nan, however, takes the prize as she went on a hot-air balloon ride, adapted for the disabled. She said: “The sense of achievement was amazing”.

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Put Your Hands Up for Wear Your Gloves to Work Day on 29 June 20112

n 29th June this year we will be asking people to Wear their Gloves to Work for the Day. For many people with scleroderma, the idea of wearing gloves in late June will not come as a surprise. Raynaud’s phenomena is something that affects many and can lead to you wearing gloves in the most unusual of circumstances, whether that is when shopping, to work or whether out walking in what to many would feel like a warm day. This year, for World Scleroderma Day, we want to raise awareness of this issue and are looking for as many people as possible to wear their gloves to work to raise awareness and money for the Scleroderma Society.

Can you help us out? Getting involved is simple. We are currently producing a fundraising pack with lots of fun ideas to raise money and awareness on the day. Why not wear an unusual pair of gloves to work – if you work in an office wear a pair of boxing gloves, gardening gloves, or what about a pair of gauntlets? We are producing sponsorship forms, posters and badges for you to use at any events and we are happy to help out if you would like support in getting in contact with the local newspaper or radio station. Wear Your Gloves To Work Day is a new idea which we plan to run on an annual basis to help raise funds and awareness. Scleroderma is still very misunderstood as is

the impact it can have on people’s lives. We hope that by getting people to wear gloves to work on 29th June, we can start to help people understand this disease. It would be great if you could do your bit to help. Could you organise an event, could you publicise the event at work, do you know a celebrity who might sign a pair of gloves that we could auction? All these things will help, but of course, you could just wear your gloves to work. If you are interested in getting involved in Wear Your Gloves to Work Day please contact us by email, telephone, letter, or, if you have the right gloves, use semaphore. Mike Rich, CEO

Put Your Hands Up for WYGWD on 29 June

Could you organise an event, could you publicise the event at work, or do you know a celebrity who might sign a

The Saga of Dame Carol Black’s Portakabin Part One: The Lack of Space In the July 1991 newsletter, Pam reported on an issue associated with Dame Carol Black. At that time, her clinic at the Royal Free Hospital was short of space. Pam wrote that Dame Carol “needs more room. She would like a Portakabin outside her office so that she can spread. To get this funded by the hospital is impossible and she proposed to run a half or whole marathon and try to get sponsored. I am sure we could get lots of people to sponsor her, but I don’t know about you but I feel a doctor shouldn’t have to go to such

pair of gloves that

lengths. I wondered if we could help her instead. In this matter, has any member got contacts with a Portakabin manufacturer who may be feeling generous and would let us have one very cheap? Perhaps we could start a Portakabin fund to pay for it. I feel we owe Dr Black something as it was her initiative that started our Society in the first place”. Part Two: The Solution In the Spring 1992 newsletter, Pam reported on the resolution to Dame Carol’s space problem. She wrote: “I am glad to be able to tell you about Dr Black’s proposed

Portakabin. Unfortunately, after all the plans, the hospital authorities were unable to allow siting where originally planned. Then began a long struggle. As many of you will know the Rheumatology department is on the lower ground floor, so Dr Black tried instead for permission to utilize a room or space. There is finally agreement to allocate her space near the reception desk. This will need refurbishment and we propose, with kind permission of those who sent money for the Portakabin, to use this for the refurbishment.

Pam xxx 1991 and 2

we could auction?

Dame Carol Black at the Society’s 25th anniversary AGM and conference

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Essex, London and Kent Group

East Anglian Group

From left to right, Daphne, Val, Vanessa, Jacky and Margaret from the East Anglian group

HELP NEEDED TO LEAD HANTS GROUP This will be the last local group meeting we will be organising. After 12 years or so, we feel it is time to step back and let someone young take over! If anyone, living anywhere in Hampshire, feels even a small amount of interest, please call or email Liz to discuss. We have enjoyed our time coordinating this group, latterly with immense help and support from the Rheumatology team at QA. Many thanks Liz and Steve Holloway

Daphne, Val, Vanessa, Jacky and Margaret from the East Anglian group who met on 11th March for an informal chat over a cup of tea at Jacky’s. As always, there was plenty to talk about as we had not seen each other since last September. Our next meeting will be on Saturday 26 May at 2.15 for 2.30 at Jacky's (in Felixstowe at the end of the A14). Depending on availability, we will either have a session on Medicines for

Scleroderema from our pharmacist member or a repeat of the successful session on excercises from our retired physiotherapist member. We have thought about meeting further west or north in the region but as we now have 6 members in Ipswich and Felixstowe and a couple not that far away, we decided to stay with our regular venue. For more information about the Group and our meetings, please contact Jacky on: 01394 286637 or jacky@sclerodermasociety.co.uk

Hampshire Group On Sunday 18th December, Steve and I were lucky enough to be able to join Tracey for her annual Christmas curry lunch. This is always such a good occasion and as usual we thoroughly emjoyed the afternoon in The Blue Cobra, Portsmouth. Tracey treated us to a delicious meal and at the end, we were all asked to make a donation to The Scleroderma Society. This event is in memory of Tracey’s father who had scleroderma. I’m very pleased to report that just over £152 was raised. I would like to thank Tracey very much for her

generosity on this occasion, as well as her much-appreciated support always given. The next meeting is on Monday 14th May at 6.30pm in the QA hospital, Cosham, in the Education centre, E level. We are lucky enough to have Dr Fiona McCrae as our speaker and her topic will be “The Skin and Calcinosis.” There should be plenty of time for questions, as well as refreshments and chat. Looking forward to seeing you. Liz Holloway

Please note the next meeting is on Saturday May 26th @ 2pm with lunch provided. Please contact me at dollydumpling23@gmail.com for more information or telephone 01702 344925 and leave a message. If you're coming for the first time let me know of any dietary requirements. Amanda Thorpe Royal Free Support Group The Royal Free London Support Group met on 17th February. 12 people attended and Ruth Westwood, a dietician, gave advice on nutrition. She spoke about the importance of a good diet, complications faced by scleroderma patients and how to overcome them. The next meeting will be on the 27th July 2012 in the Rheumatology Library on the lower ground floor. Call 0207 8302326 for more information. Kim Fligelstone, Chair

Used British and foreign stamps can be donated to raise funds, and Alison McGlashan kindly continues to collect these for us. Please send any you have to Alison at 10,Bothlyn Avenue, Kirkintilloch, G66 3DU.

West Sussex Group

The West Sussex Group catching up in March

The West Sussex Group met once again at Findon Garden Centre on 17th March. We prefer this venue as it's quite central to the area, so it’s convenient for everyone to attend and they serve lovely tea, coffee and cakes as well as being a very

good garden centre! There were 6 of us this time; myself, Lesley, Steve, Liz, Bill and Janet and although we didn't have any new people this time, it was lovely to catch up with everyone and hear the latest news. We managed again to persuade the helpful staff at the garden centre to take our photo! Our next meeting will

probably be June/July time, again at Findon Garden Centre. Please email or ring myself or Lesley if you would like to come or even if you would just like a chat, some information and support. You're also very welcome to just turn up on the day! Jo Frowde and Lesley Dodd

Scleroderma Society: Spring 2012

Trustees Kim Fligelstone (chair) 6 Portishead House Westbourne Park Road London W2 5UP 020 7229 4750 kim@sclerodermasociety.co.uk Steve Holloway (secretary) steve@sclerodermasociety.co.uk 020 7000 1925 Richard Dodds Richard@sclerodermasociety.co.uk Susie Hoare susie@sclerodermasociety.co.uk

Contact Details Aintree University Hospital Jan Lamb 0151 525 5980 bleep 2231

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

Bath Royal National Hospital for Rheumatic Diseases Sue Brown 01225 428823

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

Belfast Ulster Hospital Audrey Hamilton 02890 561310

Helena Rozga Helena@sclerodermasociety.co.uk

Dundee Ninewells Hospital Steve McSwiggan 01382 633957

Chief Executive Mike Rich mike@sclerodermasociety.co.uk 020 7000 1925

Leeds Chapel Allerton Hospital Elizabeth Tyas 0113 3923035

Fundraising Louise Cecil Flora Cottage, 27 The Square Potten End, Near Berkhamstead Hertfordshire HP4 2QT 01442 879129 fundraising@sclerodermasociety.co.uk

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

Christmas Cards Celia and David Graham The Scleroderma Society PO BOX 581 Chichester PO19 9EW 020 7000 1925 cards@sclerodermasociety.co.uk Office The Scleroderma Society PO BOX 581 CHICHESTER PO19 9EW 020 7000 1925 info@sclerodermasociety.co.uk Cynthia Leslie (newsletter) cynthia@sclerodermasociety.co.uk Calendar of Events Julian & Dom Becher 18 Helena Close Portslade Brighton, BN41 2DQ 01273 415517 calendar@sclerodermasociety.co.uk Helpline The Scleroderma Society operates a free helpline. We cannot offer medical advice, but if you feel you need someone to talk to we can be a good listening ear and will help in any way we can, 09:00-21:00 every day. Tel: 0800 311 2756. Calls are free from UK landlines. Carer Support Group For more information on the Carers’ support group contact Michael Thorpe. 01702 344 925 michael@sclerodermasociety.co.uk Nurse Specialist Advice Lines These nurse-led advice lines are for general inquiries only, not emergencies. If the nurse is unavailable, you may need to leave a message so he/she can call you back. Some of these Nurse Specialist Advice Lines are part-funded by the Raynaud’s and Scleroderma Association

London -Royal Brompton Hospital Respiratory (lung) queries: Lucy Pigram 07758 8943 175 Manchester Hope Hospital Liz Wragg and Catherine Lambe 0161 206 0192 Newcastle Freeman Hospital Scleroderma queries: Karen Walker 0191 223 1503 Pulmonary hypertension queries: Rachael Crackett / Julia De-Spyza 0191 213 7418 Portsmouth Queen Alexandra Hospital Paula White / Julie Ingold 02392 286935

Local group contact details Buckinghamshire & Hertfordshire Marilyn York Tel: 077 0259 2387 andrewandmarilyn@btinternet.com Derbyshire, South Yorkshire, Staffordshire & Cheshire Diana Twigg 01298 24539 diana@sclerodermasociety.co.uk

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Hampshire Liz and Steve Holloway 01243 539466 liz@sclerodermasociety.co.uk Lancashire and West Yorkshire Sheila Procter 01282 429004 sheila@sclerodermasociety.co.uk Merseyside Helen Lingwood 0151 2222764 Helen@sclerodermasociety.co.uk East Midlands Cheryl Darch Tel: 0116 2717180 cheryl@sclerodermasociety.co.uk North Wales Kate A Owen 01492 515834 Oxfordshire & Berkshire Melanie Bowen 01865 515067 melanie@sclerodermasociety.co.uk Powys & Mid Wales Jennifer Ames Tel: 01544 267988 Scotland Frances Bain 0131 477 1122 South London Celia Bhinda Tel: 020 8698 6294 celia@sclerodermasociety.co.uk South Wales Belinda Thomson 02920 612690 belinda@sclerodermasociety.co.uk Surrey Nicky O’Shea 01483 764524

nicky.oshea@live.co.uk West Sussex Joint contacts: Jo Frowde & Lesley Dodd Jo: 01403 741445 or 07922274167 jo@sclerodermasociety.co.uk Lesley: 01903 753971 lesley@sclerodermasociety.co.uk Wiltshire and North Hampshire Lynn Morton 01980 863444 lynnm@sclerodermasociety.co.uk

East Anglia Jacky March 01394 286637 jacky@sclerodermasociety.co.uk East Sussex Rosanna Clifton rosanna@sclerodermasociety.co.uk 01424 426738 © Scleroderma Society 2012

Disclaimer: The Scleroderma Society does not endorse any drug, treatment or opinions reported within this newsletter. You should always consult your doctor first for personal advice on any medical matter.

Scleroderma Society: Spring 2012

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An Inspiring Day at the John Radcliffe. In January, I was asked if I would be a patient for medical students from Oxford University as part of their exam finals. I willingly agreed.

Melanie Bowen

We have always

Taken by taxi to the hospital, I joined the rest of the patients, helpers and examiners. After a very nice breakfast, we were installed in our examination rooms and a bell announced the arrival of the first student. Altogether, 55 students examined me, mostly young women who seemed quite nervous. They were asked to examine my hands and face, and were given 4 ½ minutes to make a diagnosis.

I have small digital ulcers on 4 fingers, plus remnants of previous ulcers, and telangiectasia. The students asked if I ever got cold hands, whether they changed colour, and how often it happened. When asked by the examiner what these symptoms might indicate, the majority suggested scleroderma. Some, when asked which organs could be involved, mentioned kidneys, lungs, heart and oesophagus. After a good lunch, the afternoon session began. This proved even more successful, despite one very uncertain

student who diagnosed Scabies. The examiner was not impressed! All the students were polite, washing their hands before asking permission to examine me, and making sure they were not causing any pain. The day ended at 5.30 and after tea and biscuits, we headed home, weary but overwhelmed with the success of the day and the fact that so many students had an awareness of Raynaud’s and scleroderma. Melanie Bowen

Our new Membership Database

taken the security of our data very seriously, and we will not share the information we hold with any other organisation.

Article on page 11

Next newsletter deadline is 3 July

Work has been going on during the past six months to transfer our membership database to a new internet based system. The new membership database is now fully operational and in daily use, and we are already seeing the benefits. The Scleroderma Society started to use a computer database to record membership details many years ago. When I became membership secretary in 2005, I was pleased to find that basic contact information about members was already held on a computer. Since then, as membership numbers grew, it became necessary to develop a very comprehensive membership database which not only recorded members’ contact details, but also automated other important membership activities such as keeping track of and reminding members of their renewal date, newsletter

distribution by post and by email, and all the record keeping and tracking required to process Gift Aid. Over the years the database has been extended to enable us to keep track of donations from members and non-members, to produce personalised thank you letters when donations are received, and to manage our Member Contact Scheme. It is also used to provide routine management information to the trustees. It became clear in recent years however, that as our membership activities increased, and as the membership database became more and more important as a tool to manage these activities, we needed to move from our “home made” system and invest in a commercially available and properly supported database – not dependent on the IT skills of the membership secretary!

We are now in the process of integrating the database with our website to enable members to access their own membership record and keep it up to date, and we expect to launch this development in the next 3 months. We have always taken the security of our data very seriously, and the society is a registered data user under the terms of The Data Protection Act. We will not share the information we hold with any other organisation, and we will only distribute contact information between members who have signed up for our Member Contact Scheme. If you would like to know what information we hold about you, please either send me an email steve@sclerodermasociety.co.uk or write to me at PO Box 581, Chichester, PO19 9EW. Steve Holloway Membership Secretary

Scleroderma Society: Spring 2012

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Thank You! Between 17 th December 2011 and 10th March 2012 we received £22,326 in donations, Gift Aid and Give As You Earn. This is a wonderful amount and our grateful thanks go to all those kind and generous people and organisations who contributed. This includes sponsorship from the friends and supporters of all those who have set up fundraising pages on the JustGiving and Virgin Money Giving websites. If we have missed your name from the list we apologise. Miss L Allason-Jones M Anderson Susan Armstrong Vicky Arnold Mr R Bain Mr & Mrs B Bird Mr. Alan Brain Mrs Isobel Burks Mrs. AE Burt Jean Campbell Ms Grace Chen Mrs. Rosa Lucia Cole Karen Cook Anthony Coombs-Humphreys Mrs HC Craig Mrs D Davies Mrs Jane Davies Dr Lois Drawmer Mrs T Ellis Mr HL Evans Ms Kim Fligelstone Mrs C Garratt Patricia Gilbert Mrs K Glynn

Mrs RLM Roberts Mrs H Ross Mr P Rowlands Miss Yvette Saggers Mr & Mrs Roy Sanders Sue Simpson Sonya Sinclair Mrs Freda Spain Mr & Mrs J Stephenson Mrs Linda Stewart Mrs. Valerie Storey Mrs Patricia L Taylor Mrs Jan Temlett Mrs. Carol Todd Mrs. Joan Turner Catherine E Upton Michael Vidler Mrs. Julie Watson Ted & Robyn Watts Mrs N Weal Mrs Helen Webb Mr Bill Woods Jenny Yates

Mrs. Ann Hall Mr D Hollamby June Holmes Mr. Matthew Hooper Mrs LR Hunt Shamim Hussain Mrs. Tracey James Tina Jones Mr R Jones Mrs. Carol Kindon EM Lilly Mr C Martin Mrs Linda McDonald Mr Paul Moss Emma Norris Mrs VS Norwood Mr S Pallett Tracey Phommavanh Mr M Pilcher Mrs K Pilkington Diana Pringle Mr. Steve Pullman Phil Pyatt Mrs J Ramsahai

2012 Subscription Renewals 304 members are due to renew their membership of The Scleroderma Society on 1st April. Many members renew by Bank Standing Order and we don’t send reminders. If you usually pay by cheque or by using our online payment facility, you will have received

a reminder letter, either in the post or by email. By the time you read this, many of those payments will have been received. Thank you.

subscription is not due this year. To save money, we don’t usually send receipts for renewals. If you would like a receipt, please let me know.

If you have not received a letter or email reminder, then you have nothing to do! Your

Thank you for your continued support for The Scleroderma Society. Steve Holloway

info@sclerodermasociety.co.uk

Scleroderma News Now you know: Your Society is in the hands of a new CEO (p1) How to exercise your fingers (p3) Smiling is good for you (p6) How to help WYGWD (p7) Your data is safe with us (p10)

A big thank you to Liz and Steve Holloway, retiring from the Hants Group, for running it so successfully.

Scleroderma News In the next newsletter:

eular 2012: The European League Against Rheumatism. The next EULAR Annual European Congress of Rheumatology will take place from 6-9 June 2012 in Berlin, providing a unique event for the exchange of scientific and clinical information. It will be a platform to facilitate interactions between patients, medical doctors, scientists,

A big PLEASE send in photos of all your events! Everyone loves to see you in action. Send them to the office at:

health professionals and professionals representing the pharmaceutical industry both from within Europe and from around the world. In addition, EULAR 2012 will again welcome delegates from the Paediatric Rheumatology European Society (PReS) to a Joint Congress. Eular will also

continue the initiative of closer cooperation with primary care physicians and professionals - a commitment started in London in 2011. For more information visit the Eular website at www.eular.org The Scleroderma Society newsletter will report back to you after the Berlin Congress.

Success of WYGWD Marathon reports Health advice and much more…

Reliable Books about Scleroderma

Help line requests Has your bladder been affected by scleroderma? If so, would you be happy to talk about your experience with another member? If you can help contact Kim on 0207229 4750 or kim@sclerodermasociety.co.uk

Diary Dates for 2012

Order through your local book shop and are available through www.amazon.co.uk in the UK, www.amazon .com in the USA

Brighton Marathon

15 April

London Marathon

22 April

The Scleroderma Book By Maureen Mayes, M.D., M.P.H. ISBN 0-19-516940-9 A comprehensive guide to the disease written especially for patients and their families Voices of Scleroderma Volumes 1 - 3, by ISN Three volumes of stories from around the world Scleroderma - The Inside Story By Anne H Mawdsley MBE ISBN 0-9538297-15 The Best of the Beacon Edited by Marie Coyle A marvellous collection of articles Scleroderma Coping Strategies

Hampshire Group

14 May

East Anglia Group and Essex, London and Kent Group World scleroderma day and Wear Your Gloves to Work Day 30th AGM/Conference

26 May

Royal Free Group

27 July

Olympic Games

17 July 12 August

Paralympic Games

29 August - 9 Sept

By B. Bianca Podesta ISBN 978-1-936401-18-5 Available from www.sclerodermacoping.com

29 June 29 June

30th AGM and Conference 14 July 1012

Wear Your Gloves to Work Day is on 29 June 2012

Want to know how to get involved in WYGWD? Get your information pack by contacting our office at info@sclerodermasociety.co.uk or call us on 020 7000 1925

Work is progressing on our major awareness raising campaign, encouraging people to wear their gloves in summer as they go about their daily lives – at work or school or going to the corner shop for a pint of milk. Love it or hate it, social media such as FaceBook are probably going to be very important in helping us get support for this campaign – especially from our friends and friends of friends! We are going to be using the Society’s own FaceBook page to publicise Wear Your Gloves to Work Day and hope that you will help us by ‘liking’ us if you or anyone in

your family has their own FaceBook page. We are finalising a pack of information explaining how easy it is to get involved and we’ve written to a range of celebrities and companies across the UK asking for their support. Members have also been volunteering to talk to the media about their experiences, which will be a great help in trying to explain the complexity of scleroderma and its very real effects on day to day life. As explained in the last newsletter, the idea is to get people to pay a small amount of money to wear

You can raise money for the Scleroderma Society online at

their gloves to work, school, going to the shops, down the pub – wherever they go - on 29 June. This would help us not only raise money but also awareness on World Scleroderma Day. By drawing attention to one of the symptoms of scleroderma in this simple ‘light hearted’ way, we hope to be able to raise awareness more generally about scleroderma. If you would like more information about taking part or talking to the media please email info@sclerodermasociety.co.uk