Tightrope newsletter of the Scleroderma Society Autumn 2012
Keeping warm this winter Don’t let your house become a prison
Plus: Digital ulcers Members’ survey Local groups round-up
welcome
A big hello to everyone as we leave the summer behind. What summer? I hear you say. Yes, I know, my winter woollies were packed away in June and retrieved on numerous occasions throughout the summer and my boots were in and out of storage rather like a Jack in the box!
Mike Rich our Chief Executive has been with us for six months now and has helped us make some huge headway into our ambitious plans for the next five years. Where we will focus on raising more money for research while at the same time increasing the services we provide for people with scleroderma. We are on target financially and with our strategic objectives, so it is looking good. My thanks go out to all who have contributed to our success so far this year in whatever way. I am always astounded by the generosity of people whether it is making a donation, fundraising or donating that most valuable resource, “time”. Where would we be without our volunteers? There is so much volunteer activity. Forgive me for not citing everything but just to mention a few. The local groups and contacts continue to flourish thanks to the leaders, supporters and to Liz Holloway our expert coordinator. It was Liz who talked me into getting more involved with the Society and become the helpline manager and I am so pleased to be able to make a small contribution.
Helena Rozga, Trustee helena@sclerodermasociety.co.uk
why Tightrope? Choosing a new name for a newsletter is always difficult. So this is why Tightrope is only a temporary name. Over the next few months we are going to be asking our members and supporters what they think of our name, our logo, our newsletter and other publications. Some people love our current logo because they feel that it explains perfectly what living with scleroderma is like. Others think that it is a bit negative. It would be great to have your opinions.
The helpline goes from strength to strength, again solely because of the professionalism of Belinda, Paula, Liz and Kim. We all say that it is so rewarding to be able to support others going through the complexities of Scleroderma. For example, helping someone who is newly diagnosed and very often making their first contact and when they are feeling all alone, we are able to offer support, information and links to networks, medical and health professionals to help them feel connected. A quick update on the helpline: we are taking on more helpline volunteers and will be having some more training in the autumn. Volunteering in any way is very important to the wellbeing of the scleroderma community. If you feel that you can help with setting up a support group or being a local contact or giving some of your time in any way, please get in touch. Many people want to help but don’t know where they could add value, so pick up the phone talk to us or e-mail and we could map out a route together where your time could be best utilized. That’s enough from me at the moment but I will be talking more about boots and shoes in the next issue. (Imelda Marcos style !) I do hope you enjoy reading our autumn edition of Tightrope. Best Wishes
Helena Helena Rozga Trustee
Please note our new address Contact us... Telephone: Mail: Email:
020 7000 1925 The Scleroderma Society Bride House, 18-20 Bride Lane London, EC4Y 8EE info@sclerodermasociety.co.uk
Charity No. 286736
society news
“our aim is to become the support group for people with scleroderma”
Benefits warning
This is a recent letter from one of our members and reflects a number of queries that we had about incapacity benefit. The Scleroderma Society is currently looking into ways in which we can support people with scleroderma who may be facing re-assessments of their capacity to work. We would be interested to know from members whether they have been affected by a re-assessment and of their experience of any re-assessment. All your information will kept as confidential. Please write to the office or email: info@sclerodermasociety.co.uk Hi, ATOS as many may be aware have won the contract from DWP to implement the transition from incapacity benefit to employment support allowance. All claimant’s from age 16 to 64 will be contacted. Please be warned this companies aim is to get as many claimant’s back to work as possible they are ruthless in their approach. I have been very fortunate in that I came across a very helpful online organisation called Benefits and Work they charge a yearly subscription fee for the best help and advice on dealing with ATOS and filling in forms. I just wanted to share this information with my fellow Scleroderma sufferers and to warn them not to be complacent regarding the transition. Name and address supplied
New office
The Society has moved in with the British Society of Rheumatology! For the first time in our 30 year history we have moved into an office. We are sharing an office at the BSR building in London with the charities National Voices and ARMA. We think that this is a really positive move and will enable us to further expand the work that we are doing.
Christmas Cards
Unfortunately, due to a printing delay, the Christmas Card order form was not included with the last copy of the newsletter - we do apologise for that. You will find it with this newsletter together with a pre-paid envelope. There is still plenty of time to get your Christmas Cards ordered and sent.
Volunteering
As you all know, up until recently the Society has been managed and run solely by volunteers for the past 30 years. We now have one member of staff but that is just one pair of hands and we will continue to need volunteers if we are to move forward and thrive. We will be approaching members over the next few months to see if you could help and
Questions, questions, questions?
what skills you have. An hour a month can make a difference, so please don’t be shy. And if you live in London, you could always come and volunteer at our new office.
Jobs
As part of our expansion plans, the Society is about to announce two new roles which will work out of our London office. We will be looking for both a Project Executive and a Fundraiser. The role of the Project Executive will be to provide support for the Chief Executive and to run the office. The person appointed will need to be a self starter who can take the initiative. We are looking for someone with computer, database and book-keeping skills as well a general office experience. This role might suit a returner to work as we are offering flexible working between 21 and 28 hours per week. We are also looking for an experienced fundraiser. This will also be offered as flexible working. The person we are looking for will have experience in writing trust and corporate applications and have a good working knowledge of the fundraising field. Job details will be on our website, so if you think you would like to work for the Scleroderma Society, why not have a look. If you would like to discuss either of the roles, please contact Mike on the office number or email him on mike@ sclerodermasociety.co.uk.
We are very keen to know more about our members and supporters. This is so that we can develop services that are more appropriate and useful to people with scleroderma. With this newsletter you will have found a fairly long survey which looks at a wide range of questions. Some are about scleroderma and how it has affected you. Others are about the services that you may have used such as our leaflets, this newsletter and our website. We estimate that the survey will take less than half an hour of your time and maybe considerably less. We would really appreciate it if you could take the time to fill it in as the answers that we receive will shape the Scleroderma Society and what we do for the years to come. All information will be kept in complete confidence and we will not be able to identify you from your survey, so please do let us know what you think, good or bad. If you would like an electronic version of the survey, you can download it via our website. We will be publishing the results of the survey over the next few months. Thanks in advance for your help. It really will make a difference. If you would like a copy of the survey emailed to you please contact info@sclerodermasociety.co.uk
Keep wa “Every mile is two in winter� George Herbert (1593 - 1633)
Do some chair exercises Did you know? The Scleroderma Society has its own grant fund. This can be applied to by individual members who need financial support. This can include help with heating costs. If you would like more information about our assistance grants or would like to apply, please contact the office or email info@ sclerodermasociety.co.uk in strict confidence.
If you are struggling with your heating bills, call the Home Heat Helpline: 0800 33 66 99
If you are on certain types of benefit you may also be entitled to Cold Weather or Winter Fuel Payments. Ask at your local CAB or call our FREE, confidential helpline.
If you are over 60, call the Winter Fuel Payments Helpline: 0845 915 1515 If in doubt or you need help, call your local Citizens Advice Bureau or your local council
Try a thermal base layer
arm this winter It is no secret that the last two winters have seen periods of sustained cold. It is also no secret that people with scleroderma feel the cold.This can be for a number of reasons from secondary Raynauds through to a lack of subcutaneous fat. Thyroid abnormalities such as hypothyroidism can make people more susceptible to the cold, and such problems are not uncommon in scleroderma. A change in temperature is often the trigger for Raynaud’s attacks and a drop in temperature can cause symptoms, regardless of the absolute temperature. It is important to keep warm, and some people find products made from merino wool very helpful, or possum gloves, or heated gloves. Here are our tips for keeping warm this winter. Please let us know if you have your favourite way of keeping warm so we can let other people know. Keep curtains drawn and doors closed to block out draughts. It is pretty dark outside anyway so pull the curtains, turn on a lamp and relax. Keeping areas of your house or flat closed off keeps the heat in. Have regular hot drinks and at least one hot meal a day if possible. While we know that many people who have scleroderma find it hard to eat, a warm meal and warm drinks are an important way of staying warm. Why not try soup if you have swallowing problems? Layer, layer and layer. Wear several light layers of warm clothes. This works better than one thick chunky jumper. Base layers can be very effective at keeping you warm and are available in many camping shops.
the number of layers that counts rather than the thickness of the layers. Also remember your gloves or mittens. A pair of hand warmers can be very useful to keep in your pocket. Last of all, don’t forget your scarf and hat, and remember that in cold weather, pavements, stairs and roads can become very slippery so wear shoes or boots which have a good grip.
Indoors it is important that you keep your main living room at a temperature of between 18 and 21°C. You will also need to keep the rest of your house at a temperature of at least 16°C - if in doubt, it is worth getting yourself a Keep as active as possible. Just thermometer. If you can’t heat all the because it is winter and just because you are inside doesn’t mean that you should not rooms you use, heat the living room keep active. No matter what your mobility, during the day and the bedroom just it is possible to do some exercise and this is before you go to sleep. really helpful both in keeping you warm and Take care of your skin in winter and in keeping you fit. make sure you use plenty of moisturiser and please remember if Wrap up warm if you need to go outside you have any form of lung problems on cold days. Most of you will not need telling this, but it is vital that you make sure with your scleroderma these can be exacerbated in the cold weather. that you are well wrapped up if you are planning to go outside, and remember, it is Stay warm
Thank you!
Between 14th June 2012 and 21st September 2012 we received £19,598 in donations, subscriptions, 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.
Mr. Alan BrainlMrs. Terry Cane lSylvia Child lMrs G Coats lMrs. Rosa Lucia ColelMr & Mrs DA DoddslChris Duckworth lMrs. Chitra Dutta lMr DR Elford lMiss E Farmer l Mr. Alex Franklin lMs Christine Gabbitas l Miss V Garratt l Mr G Hicks lMrs. Lesley Hicks l The Rt. Hon. the Lord Higgins, K.B.E., D.L. l Mr Frank Hill l Mr S Holloway l Marilyn House l Mrs. Tracey James l Linda Jones l Mrs R Kassam l Mrs Sonia Lewis l Mrs S Littlefear l Mrs. Dorothy Luxton l Mr C Martin l Thain Martin l Dr J McShane l Mr K
Mittens are better at keeping your hands warm than gloves. You can even get some mittens with built in hand warmers and some that you can microwave.
Check our Facebook Page for more tips on keeping warm this winter Morgan l Mrs. Christine Pattinson l Miss MA Perkins l Mr & Mrs R Petch l Mrs. Margaret Pooler l Mrs. Jennifer Roberts l Sonia Roberts l Cindy Roch l Mrs Diana Runge l Mrs Marjorie Simpson l Sue Simpson l Mrs CA Souter l Miss J Springett lMrs Patricia Stannard l Mrs Linda Stewart l Mrs. Valerie Storey l Mrs. Rosemary Terry l Mrs. Jean Vernon l Michael Vidler l Mrs. Deborah Webb l Mrs V Webb l Mrs. Jennifer White l Mr Philip Wiskin l Mrs. Marion Worledge.
The
Scleroderma Society is managed in a very businesslike way. One of the reason’s for this is that we realise that every penny of the money that supports the organisation comes from individuals and we believe that it is our role to ensure careful stewardship of that money and to make sure that all of it is spent in a way which furthers the aims of the organisation and helps improve the lives of people with scleroderma. We currently are working to a five year business plan which will see a significant expansion in the organisation. The infographic on the left takes some of the highlights of the business plan. As you will be able to see, at the heart of the business plan is the improvement of life for people affected by scleroderma. We are planing to grow our services so that more people have the access they are looking for to support, information and advice. We are also looking to increase our advocacy role so that we can make scleroderma a well recognised disease which health professionals recognise quickly so that diagnosis and support can be quickly achieved. We also want to raise awareness amongst the general public. If you would like to see a fuller copy of the business plan or talk about how you can help us fulfill it please do let us know. You can contact Mike Rich at the office or by emailing mike@sclerodermasociety.co.uk or Richard Dodds by emailing richard@sclerodermasociety. co.uk. We will be keeping all of our members in touch with what we achieve over the next few years both in our newsletter and on our website so please keep an eye out or just ask about anything you want to know.
Results from recent on-line survey How long did it take you to get a diagnosis of scleroderma? Under one year 18.2% 1 year to 2 years 15.2% 2 to 5 years 21.2% 6 to 10 years 22.7% 11 to 15 years 7.6% Over 15 years 15.2%
15.20%
18.20%
Under one ye
1 year to 2 ye
7.60%
Less than 20% get a diagnosis in under a year
Have you ever been hospitalised because of your scleroderma? No 55.9% Yes - once 14.7% Yes - between 2 and 5 times 17.6% Yes - between 6 and 10 times 5.9% Yes - over 10 times 5.9%
Almost half have been hospitalised because of scleroderma
2 to 5 years 15.20%
6 to 10 years
11 to 15 year
22.70%
Over 15 years 21.20%
5.90%
5.90% No Yes - once
17.60% 55.90% 14.70%
Yes - between 2 a times
Yes - between 6 a times
Yes - over 10 time
Fingers are affected in 94% of people
11.80% 20.60%
Fingers and hands
42.60%
64.70%
94.10%
Face
47.10% 57.40%
72.10%
Mouth Eyes Neck (swallowing)
33.80%
73.50%
47.10%
23.50%
Stomach (indigestion/reflux)
Over the years what parts of your body have been affected? lFingers and hands 94.1% lFace 47.1% lMouth 57.4% lEyes 23.5% lNeck (swallowing) 47.1% lStomach (indigestion/reflux) 73.5% lBowel/Anus (incontinence etc) 33.8% lJoints 72.1% lSkin 64.7% lHeart 20.6% lKidneys 11.8% lLungs 42.6%
signing up support Introducing Hollie Thorman Hollie is a 24 year old Journalism Masters Degree graduate from Hornchurch, and an ex-patient of Queens and The Royal London Hospitals, now undergoing treatment at The Royal Free in London. She has organised a charity event in order to raise money for The Scleroderma Society, a charity close to her heart, as she has been diagnosed with the illness. For the past year she have been writing to famous people telling them about her illness and charity event, and asking for donations of signed photographs. She have now gathered around 60 autographs from world famous faces in TV, Film, Music and Business. Hollie is very excited to auction them off at her charity event on October 13th (7-11pm) at Rainham Social Club.Tickets (available on the door) are £5, under 10s go for free. EVERY penny made will go to The Scleroderma Society. The autographs Hollie has been hard at work gathering autographs and has a massive line up for those of you interested in television, film, business and even politics. Autographs that Hollie has currently include: Joanna LumleylHelen Skelton (Blue Peter)lBarney Harwood (Blue Peter)lDavid JasonlPatrick StewartlDavid AttenboroughlHolly Willoughby & Philip SchofieldlFearne CottonlRolf Harris lAnne RobinsonlJames MaylTim WonnacottlDavid DickinsonlTerry WoganlChris Evans lSteve WrightlJeremy VinelRichard O’BrienlThe cast of Coronation StreetlJohn Bardon (Jim Branning – Eastenders)lCharlie Brooks (Janine Malloy- Eastenders)lChucky Venn (Ray Dixon – Eastenders)lTony Disipline (Tyler Moon – Eastenders)lHetti Bywater (Lucy Beale – Eastenders) lLorna Fitzgerald (Abi Branning – Eastenders)lJoshua Pascoe (Ben Mitchell - Eastenders) lScott Maslen (Jack Branning – Eastenders)lShane Richie (Alfie Moon – Eastenders) FILM: Helen MirrenlDaniel RadclifflMaggie SmithlBob HoskinslNick FrostlDame Judy Dench lKate WinsletlAndrew LincolnlRupert GrintlBill KnighylMUSIC: Jessie JlBrian May COMEDY: Dylan MoranlNoel FieldinglKarl PilkingtonlRichard AyoadelOTHER: Sir Alan Sugar lMichael Eavis (Glastonbury Festival)lGordon RamseylDeputy Prime Minister Nick Clegg lSir Richard BransonlKatie Piper Keep an eye on our website and Facebook pages as there might be autographs left after the event that you could bid on. Thanks very much Hollie. Belper Games, Derbyshire On the 21st July, the Belper Games were held in order to support Penny’s Fund which was set up to support and pay for treatment for Penny Wheeler who has scleroderma and pulmonary fibrosis. The fund was set up when Penny was refused some treatment by Derbyshire Primary Care Trust. The Scleroderma Society were also beneficiaries of the games and we received a very generous £500.. It was a great day in Belper. Huge fun and many thanks to Penny’s Fund and all who turned out. Backing the RSSR Also on the 21st July was the second Backing the RSSR all day music event at the Shelley Arms. This event is organised by Thain Martin. Her dad, Barry, died as a result of systemic sclerosis and she wanted to raise money to help with research and awareness. There were a host of bands on the day with the cream of musicians from the South East. All, in all, over a massive £2,500 was raised. Thank you Thain and all your helpers.
It’s a knockout at the Belper Games
If you would like to help fundraise for the Scleroderma Society or would like some help please contact the office.
Dinner at the Royal College of Physicians
Scleroderma Society member Mari Davies tells us why she is glad she entered the 2012 AGM raffle Those of you who attended the last AGM will recall that as usual there was a raffle. This year the top prize was dinner for 4 at the Royal College of Physicians. Well I was the lucky winner! The dilemma was, who should I invite (in addition to Jeff my husband)? Having eliminated our two grown up sons, my husband and I quickly concluded that it was most appropriate that long serving committee members who have given so much to the Scleroderma Society should join us on this special occasion. So it was that Kim and Steve (Holloway) accepted the invitation to join us. After much deliberation the menu was settled and the date of the 12 September fixed. So it was, we gathered at the Royal College of Physicians on the 12 September. For those who do not know the location the college is located on the edge of Regents Park just off the outer circle road. It is an impressive unique modern building from the outside, but inside it is even better. The walls are hung with paintings of the past presidents of the college going back 500 years into the early 1500’s. We managed to find the painting of Dame Professor Carol Black our patron/president (with help from Kim). Hopefully it will not take 500 years for the picture to hang in a more prominent place! The pictures are not the only artefacts the college has gathered over its 500 year history and we only had time to glimpse a few. I got the impression that it is not just an attractive but that it is also a practical building to meet the needs of the college having lecture theatres, conference facilities and meeting rooms (as well as a number of dining facilities).
panelling came from the previous location of the college. Unfortunately we did not take a photograph of the painting of Henry VIII who founded the college. The meal and different wines with every course was served by a butler and his assistant. (I will not make you too envious by running through the menu suffice to say it was very nice). The meal was rounded off with coffee and chocolates. The butler Tim and his assistant did a fine job being attentive without being intrusive, not an easy balance to strike. It was a thoroughly enjoyable evening, good food, good company and a very fitting way to say thank you to Kim and Steve for their long service to the society. It was a wonderful raffle prize and who knows what you might win if you come to the next AGM and buy raffle tickets! (But I do not expect the first prize out of the hat to be as good as the one we had this year).
Our evening started with bubbly (water for me unfortunately) and canapés giving us the opportunity to take in a view of some of the paintings of past presidents before going through to the Censors Room for dinner. The photograph gives an indication of the splendour of the room. The Spanish Oak
QUESTION
Iloprost What are the general benefits of iloprost? Iloprost is often prescribed for people with severe circulatory problems. For example, it can be used in the treatment of digital ulcers and gangrene of the toes and fingers. It is used to treat vascular complications and improves the circulation by widening the blood vessels and helping the prevention of clotting which in turn helps to repair damage to blood vessels. Your doctors will prescribe iloprost if they think that you’d benefit from improved circulation. In Raynaud’s, as it can reduce the frequency and severity of attacks. The benefits are not permanent; there may be up to three months of benefit. Iloprost can also dampen down some of the processes that are involved in fibrosis and it may give temporary benefits in terms of skin thickness. It is also used in PAH (pulmonary arterial hypertension) as a final therapy. If you would like a questions answered, please forward it to our office address or to info@sclerodermasociety.co.uk
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local groups noticeboard Lots of exciting news from Tracey James in Hampshire! Celia Graham (pictured below)who has designed many of The Scleroderma Society’s Christmas Cards held a card sale at her home on Saturday 22nd September. It was a lovely afternoon with lots of Celia’s hand crafted cards, lots of wonderful cakes and very charming company. Celia raised £231
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I have a live indie/rock music event on the 31st of October at The Rifle Club in Fratton. The Rifle Club is a very cool music venue and there are some very talented bands keen to play to help raise awareness and funds for The Scleroderma society. I would like to thank them and The owner of the Rifle Club, Jacqui Beeson for supporting this event and allowing us full use of The Rifle Club on the night - she is even decorating it for Halloween! Should be a fantastic night - I will write a review in the next newsletter.
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Colin Beevor at QA Hospital has set up a fantastic buddy scheme and is looking for people to support it. If you require further details then contact me. Colin is busy arranging our spring meeting at QA - details nearer the time. Finally, I would like to say thank you to my dear aunt who continues to knit toys to raise funds. I’m busy selling the Christmas stock!
Royal Free London local group
meeting
19th October 2pm - 4pm gue st speaker Keith Hunt complimentary therapies 15th March 2pm - 4pm gue st to be confirmed Please contact Tani Ngcozana for more details Tel: 0207 830 2326
Buckinghamshire & Herfordshire Marilyn York Tel: 077 0259 2387 andrewandmarilyn@btinternet.com
Lancashire and West Yorkshire Sheila Procter Tel: 01282 429004 sheila@sclerodermasociety.co.uk
South London Celia Bhinda Tel: 020 8698 6294 mcbhinda@btinternet
Derbyshire, South Yorkshire Staffordshire & Cheshire Diana Twigg Tel: 01298 24539 diana@sclerodermasociety.co.uk
Merseyside Helen Lingwood Tel: 0151 2801194 jonandhel@sky.com
South Wales Belinda Thomson Tel: 02920 625056 belinda@sclerodermasociety.co.uk
East Midlands Cheryl Darch Tel: 0116 2717180 cheryl@sclerodermasociety.co.uk
Surrey Nicky O’Shea Tel: 01483 764524 nicky.oshea@live.co.uk
North Wales Kate A Owen Tel: 01492 515834 kate.owen09@btinternet.com
West Sussex Joint contacts: Jo Frowde & Lesley Dodd Jo: 01403 741445 or 07922274167 jo@sclerodermasociety.co.uk Lesley: 01903 753971 lesleydodd@hotmail.co.uk
East Anglia Jacky March Tel: 01394 286637 jacky@sclerodermasociety.co.uk East Sussex Rosanna Cliton Tel: 01424 426738 rosanna@sclerodermasociety.co.uk East Yorkshire Lynn Hind Tel: 01482 354312 lynn.hind@hotmail.co.uk Essex, Kent and London Amanda Thorpe Tel: 01702 344925 dollydumpling23@gmail.com Hampshire Tracey James Tel: 0239 2677476 tracey.james93@ntlworld.com
Oxfordshire & Berkshire Melanie Bowen Tel: 01865 517033 melanie@sclerodermasociety.co.uk Powys & Mid Wales Jennifer Ames Tel: 01544 267988 ames60@talktalk.net Scotland Frances Bain Tel: 0131 477 1122 iainandfrancisbain@msn.com
Wiltshire and North Hampshire Lynn Morton Tel: 01980 863444 lynnm@sclerodermasociety.co.uk
Lots of support available
ISN Forum
I have been the ISN Scleroderma Forums Support Specialist for the Scleroderma Society since the forum opened in May 2009. Thanks to the continued cooperation of the International Scleroderma Network (ISN) the Scleroderma Society UK sub forum continues to provide heartfelt support to people with scleroderma all over the UK. This has been particularly helpful for people who live miles away from scleroderma specialists and other people with the disease. During the 3 years the forum has been open people have shared their symptoms, treatment and the emotional toll of having scleroderma. There have been topics about en coup de sabre, many people newly diagnosed join, parents of children with systemic scleroderma and we’re able to direct people to the right medical care, local support groups, as well as offering our own experience, a place to build relationships, albeit cyber. Many people find that their cyber relationships develop, in February 2012 I actually had a visit from another member and her husband, they were on a visit from the US and came to spend the day! It was absolutely marvellous! Through the Scleroderma Society Local Groups, it’s possible to meet other members in person! If you think that the forum is simply a place where people complain about their illness you’re very much mistaken! People are positive, inquisitive, funny, hopeful and supportive. Yes, at times, also scared, tired and sick but never lonely. If you’re not a member of the ISN Scleroderma Society UK sub forum you’re missing out on support, care and accurate medical information, by joining you have it all to gain! Any queries please email me at amanda-thorpe@sclero.org and I hope to see you on the forums! Take care.
Carers support My name is Michael Thorpe and I have worked as a Counsellor and Consultant within the addiction treatment services for over thirty five years. Five years ago, on our 10th wedding anniversary my wife, Amanda, was diagnosed with diffuse cutaneous systemic sclerosis and told, in quick succession, that she would never return to work and needed immediate treatment. When leaving the consultation I considered how serious this diagnosis really was and how were we going to cope with it. As part of our coping strategy we went on a search to find others who would understand this rare disease and what we were each experiencing as a person with the disease and as the care giver. It became clear that while the person with scleroderma was rightly pre-occupied with managing the disease itself, the symptoms, medications and so forth the care giver was muddling on alone without help because they were unaware that there was any. On behalf of the Scleroderma Society Amanda established the local group for Essex, London & Kent and this group has flourished and I am pleased to say that this has also led to care givers meeting together as well. When the local group first started there was a distinct lack of care givers and it took a few years to cultivate attendance but now the care givers group is growing as well.
Helpline
The care givers group and local group run simultaneously although people separate into groups automatically. In both my professional and volunteer work I have been involved in the development of care giver services. Listening to the needs of the care giver and getting alongside them is something I am passionate about because, I too, am a care giver. I believe it’s a privilege to be involved with others who, like me, need someone who understands their challenges which are psychological, sexual, emotional and downright painful. As well as being a care giver I acquired an Advanced Diploma in Person Centred Counselling and an Honours degree in Addiction Management. I have also trained in Humanistic, Systemic and Psycho Dynamic counselling. If you’re interested in coming to a meeting or just want to contact me please do so at mtdaac@live.co.uk or on 07502302527.
Our helpline is unique in that it is both run by volunteers who, between them, keep our helpline open for 12 hours a day, seven days a week, and that it is staffed by people with an intimate knowledge of scleroderma, not as health professionals, but as people with the disease or as the partners of someone with the disease. If you are looking to talk to someone who can empathise with you as well as provide high quality information why not give us a call. If you think you would like to help support us by helping out with the helpline, please contact Helena Rozga, our helpline co-ordinator and trustee. You can reach her via the office or at helena@ sclerodermasociety.org.uk.
0800 311 2756 9.00am to 9.00pm
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Digital ulcers Tani Ngcozana from the Royal Free Hospital recently spoke at the 2012 Scleroderma Society AGM Digital Ulcers are a common problem in patients with scleroderma. It has been reported that digital ulcers affect more that 50% of people with scleroderma. These ulcers are sores that occur as a result of a breach in the protective skin surface that may take a long time to heal and often are very painful. Digital ulcers are prone to infection, can become necrotic (at risk of becoming non-viable), gangrenous (dead tissue) and in some cases can lead to amputation. They usually interfere with daily functioning. Once they have healed up they can leave a depressed scar. Digital ulcers often have disabling effects on patients in their day to day activities. A majority of these activities are considered basic yet essential to our existence and these include dressing, buttoning, showering, eating, writing, taking out coins out of a purse, cooking, gripping, opening up cartons or bottle tops, typing and taking out money out of a cash machine. Ulcers may be complicated by infections and when left untreated, some may have to be admitted to hospital for urgent medical attention – resulting in time taken off work and loss of productivity. Other than the physical damage, the emotional trauma from digital ulcers is equally significant from the unrelenting pain with the threat of losing a functional finger to having to shield the gangrenous finger from public glare. These effects highlight the detrimental consequences ulcers may have on physically and psychologically for those affected in addition to the indirect loss it may inflict on the society as a whole.
What causes digital ulcers? Severe Raynaud’s phenomenon, trauma or altered skin elasticity (sclerodactyly) can result in digital ulcers. Other contributing factors include contractures, calcinosis, tight fitting footwear and dry skin. It is vital for patients to look after their skin to minimise the risk of developing ulcers and infections. The signs of infection are redness, pain (usually throbbing, oozing (discharge), swelling and heat or warm to touch. When an infection of an existing ulcer is suspected, it is critically important to act fast and see the GP to be assessed. This medical emergency is akin to a mini heart attack to the affected tissue. A swab needs to be taken if the ulcer is wet or discharging. GP is likely to prescribe antibiotics if infection is suspected. Wound dressings are important to encourage ulcer healing therefore it is essential to see the Practice Nurse or contact the specialist nurses for advice on appropriate dressings. The best way to look after digital ulcers is to treat infection quickly, to take pain killers as needed, correct wound dressings, good skin care, and maximum benefit from Raynaud’s medication. Some patients find GTN patches helpful, prostacyclin infusions such as Iloprost may be necessary to improve circulation. Intravenous antibiotics may be needed to treat infection aggressively. Tablets such as Bosentan may help in selected cases to reduce the recurrence of ulcers and Sildenafil may also help to speed recovery. In some cases, surgery such as digital sympathectomy to strip the nerves regulating the tone of the blood vessels may be required. In summary, digital ulcers can be very painful and difficult to heal. If there is a sign of infection, albeit subtle, it is important to have the ulcer assessed medically and start treatment quickly. Wound dressings are useful in the healing process and should be encouraged in addition to medical treatment. . It is important for patients to look after their skin. We have a digital ulcer clinic here at Royal Free NHS Foundation Trust which runs every Tuesday morning. Give us a call for more information on 0207 8302326.
Contacts Office The Scleroderma Society Bride House, 18-20 Bride Lane London EC4Y 8EE 020 7000 1925 info@sclerodermasociety.co.uk Chief Executive Mike Rich 020 7000 1925 07977 487761 mike@sclerodermasociety.co.uk Trustees Kim Fligelstone (Co-Chair) 020 7229 4750 kim@sclerodermasociety.co.uk Richard Dodds (Co-Chair) richard@sclerodermasociety.co.uk Steve Holloway (Secretary) steve@sclerodermasociety.co.uk Susie Hoare susie@sclerodermasociety.co.uk
Events Calendar 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, 09:0021:00 every day. Tel: 0800 311 2756. Calls are free from UK landlines. Fundraising If you would like to help support the Scleroderma Society through fundraising we can give you help. Please contact our Fundraising Co-ordinator Louise Cecil at fundraising@sclerodermasociety.co.uk
Bath Royal National Hospital for Rheumatic Diseases Sue Brown 01225 428823 Belfast Ulster Hospital Audrey Hamilton 02890 561310 Dundee Ninewells Hospital Steve McSwiggan 01382 633957 Leeds Chapel Allerton Hospital Elizabeth Tyas 0113 3923035 London Royal Free Hospital Scleroderma queries: 020 783 02326 Pulmonary hypertension queries: 020 7472 6354 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 Carer Support Group For more information, please contact Michael Thorpe on 01702 344 925 or michael@scleroderma.co.uk
Scleroderma Rose
The Scleroderma Society Rose is a showstopper. Its abundance of pearly blush is in cool contrast to the brilliance of its dark glossy foliage. Such shining health and crisp freshness bring a touch of quality to any garden. Bare-foot rose: £9.50 per rose + £4.95 delivery Summer-potted rose: £10.95 per rose + £4.95 delivery
Helena Rozga helena@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. Liverpool Aintree University Hospital Jan Lamb 0151 525 5980 bleep 2231
To order, please telephone R. Harkness & Co Ltd. on 0845 331 3143. For no extra charge a card and short message may be added to each rose ordered.
Alongside the ISN Forums the Scleroderma Society has also set up a new and complementary community powered by HealthUnlocked. If you are a Facebook user you may already have seen advertisements for the forum pop up on your page. Why not give both the forums a go. Have a look round and meet and get support from many other people with scleroderma.
www.sclerodermasociety.org.uk info@sclerodermasociety.co.uk 020 7000 1925