Raynaud's and Scleroderma Association by DMMonline

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Issue No. 123

Volume 1 2013

Welcome to our latest Hot News and for joining us in celebrating Raynaud’s Awareness Month. Many of you across the UK are holding events on our behalf and we are very grateful for your time and support to raise awareness, and funds, for our organisation. Please do send in your pictures from your events and let us know what events have worked well or what could be improved. We value your feedback.

In this issue...

“Rare Disorders without Borders” - time to celebrate Rare Diseases Day in February Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation. Not only is it Raynaud’s Awareness Month in February but in Europe and beyond, the last day of February is designated ‘ Rare Disease Day’. There are more than 6000 rare diseases - genetic, serious, chronic and often debilitating including scleroderma and other auto-immune conditions, affecting more than 60 million people in Europe and the US. In Europe, including the UK, the idea is to develop National Plans for Rare Diseases by the end of 2013, so that policies in healthcare and social services which have been useful to those living with rare diseases in one country can be coordinated and eventually harmonized across Europe. EURORDIS is coordinating the work at the international level and in 2013 the idea is to look at the potential to co-ordinate research and highlight Rare Diseases in health policy at national level. As well as flagging up your activities and thoughts on the RSA’s Facebook and Twitter pages, make sure you do the same thing with Rare Disease Day social media pages! facebook.com/rarediseaseday - ‘Like’ the RDD Facebook page, view the timeline and take part in the conversation on Rare Disease Day. Follow Rare Disease Day on Twitter (@rarediseaseday). Re-tweet us and use the hashtag #raredisease So, on the last day of February at 12:00 noon (GMT), why not join and raise YOUR hands to show solidarity with rare disease patients around the world! Record the event with a photo and share it with the RSA too!

Meet the RSA team Page 3

Doc Spot Page 4

Prescription Charges Coalition Watch out for the report in March! The Raynaud’s & Scleroderma Association is working as part of an alliance of over 20 organisations in England concerned with the effects of prescription charges on people with long term conditions. Currently, there is a list of exemptions for certain specific medical conditions. The list, drawn up in 1968, was revised only once, to add cancer, in 2009. The list does not cover Raynaud’s or scleroderma. A new report by the Prescription Charges Coalition is due to be published in March 2013. Its findings and recommendations will be based on a survey conducted by members last year. Collectively and individually members of the Alliance, including the RSA, will promote its findings to help influence policy makers in government and planners across the country who will form part of the new 'health and social care landscape'. The report, together with a briefing paper summarising the key points, will be available on the Prescription Charges Coalition website www.prescriptionchargescoalition.org.uk. Perhaps members and supporters of the RSA in England might wish to promote its findings to their local MPs? The situation doesn’t apply to those living in Scotland, Northern Ireland and Wales where prescriptions remain free.

Nikki’s Story Page 8

Fundraisers Page 11

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Welcome

Elizabeth Bevins

Coming into the role of Chief Executive of the RSA is certainly not the time to break one’s wrist or develop writer’s block – particularly when the first newsletter under new house management is due for collation! However, as I wish you all a warm welcome and invite you to ‘meet the team’ who will be taking the work of the charity forward and developing it over the coming months and years, I find myself challenged by a wrist encased in plaster of fetching purple (having rejected the idea of waking to daglow yellow for the next 5 weeks) and a ‘super-glued’ cut head. Not for reasons of undertaking extreme sports - for which my predecessor, Anne, remains famous – but as a consequence of Coke (sticky liquid variety, nothing illegal) camouflaged by a tiled kitchen floor, the proximity of the corner of a granite surface plus over-enthusiastic dance-like movement at 11.30 in the morning.

charity forward in future I hear you ask? I am excited at the opportunities of developing the charity further - sharing and learning new ideas; seeking to build new alliances and relationships to strengthen our position, raise the profile of the charity and encourage new as well as existing and loyal - fundraisers to work with us. The team and I are keen to ensure we continue to serve those in the Raynaud’s and scleroderma community as part of the wider auto-immune connective tissue disease community, to support and be supported by those professionals who fight these conditions. As many of you are aware, operating successfully in today’s political and financial climate presents challenges as well as opportunities, and with your support and help we will need to work differently and more innovatively in some areas for example taking advantage of ‘new’ technologies and operating in a new ‘health and social care’ landscape with changes in legislation. With the dedication of myself and the team, and with your help and support to champion what we do and contribute in whatever way you can, I know we have a rosy future.

The determination and passion with which Anne Mawdsley MBE established and has steered the charity for 30 years has been rightly celebrated as a milestone in 2012. Her talents and tenacity continue to help others through her new ‘Welfare’ spot in the newsletter; and those who seek in-depth advice and guidance based on Anne’s knowledge and personal experience. Anne is Despite this minor incapacity, it is a pleasure to an important member of the team, with much introduce you to the team who are dedicated to knowledge and experience to share. making this charity work for you; for the good of those who experience Raynaud’s, scleroderma Please do read about each of the team and related auto-immune conditions; those members’ background and experience, not who live with, work with and care for those who forgetting volunteers who have traditionally have such conditions; those who fundraise for played a vital role. us and for the professionals who work tirelessly in pursuit of better management, improved So, there you have it – the dawn of a new era understanding and ultimately a cure. for the RSA, a flavour of the hopes and aspirations of the new team and its new CEO. Thank you to all those who have contributed to this edition of Hot News – whether providing personal perspectives that readers might identify with and perhaps be inspired to share their own stories; or giving us the benefit of Chief Executive Officer medical expertise and experience. We look forward to hearing from you with ideas of what you would like to see in this Hot News communication in the future and to receiving your contributions and ideas by letter, email, through Facebook and Twitter. And what of the RSA team poised to take the

Elizabeth Bevins

Chief Executive Elizabeth Bevins President Prof. Dame Carol Black DBE Vice President Prof. Chris Denton Trustees Barry Hicks Joanna Kaddish Beverley Myers Professor Jeremy Pearson Professor David Scott Patrons Sharron Davies MBE Roger Jefcoate CBE Veronica, Lady Piercy Nick Ross David Wilkie MBE Medical Advisors Dr. M Anderson Prof. J Belch Sister S Brown Prof. C Denton Prof. A L Herrick Dr. C Lovell Dr. R Macdonald Prof. P Maddison Prof. R Moots Prof. A Silman Dr. D Veale

Head Office: 112 Crewe Road, Alsager Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk Charity Reg. No. 326306

Disclaimer: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.

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Meet the team

Sam Wilkinson

I joined the RSA in December 2012 as Operations Manager. It was a real baptism of fire as the shop was incredibly busy with sales of silver gloves and socks and the amount of enquiries we receive by post and telephone really opened my eyes to the demand placed on the organisation. Hopefully my 14 years working (and sometimes volunteering) in the not for profit sector will come to the fore and add value to the head office in Alsager. Previous charities that I have worked for are the Alzheimer’s Society, Cheshire Carers Centre and Community & Voluntary Services Cheshire East. I haven’t only worked in the charity sector but also the NHS on a few occasions and my business roots come from being an office apprentice with Rolls-Royce Motor Cars after leaving school and working my way up to Senior Secretary for the Operations Manager. I’m known for having funny little catch phrases; calling people poppet or sweet pea and wearing bright scarves! Engaging with people, both internally and externally, is very important to me and I look forward to liaising with our members in the future.

Karen has been with the Association for 18 years and many of you will know her from managing the shop sales and renewing memberships. Karen Littley has seen lots of changes at the RSA, having been here for many years. In team discussions, Karen has been excited at the prospect of developing the RSA ‘online shop’ further and is all set to visit a couple of trade fairs in the next few months so we can add to our range of useful clothing and gadgets for those suffering from the cold or with ‘troublesome digits’! Again, your feedback on products is most welcome. We know how helpful you find the silver socks and gloves so the article on the benefits of silver will be of particular interest on page 6. Karen Littley

Helen Teal

Helen Teal has had a varied career - starting out in the Black and White Minstrels in the 70's, continuing into Accountancy due to the diligence of her mother sending her to Secretarial College(so that she could always earn a living!) and now works part-time for the RSA on the Information Desk and telephones. She enjoys working as part of a team for such a worthwhile cause. Helen fields calls and is a great communicator - keen and enthusiastic to develop our use of social media. She is encouraging our fundraisers, sharing news of their exploits – in Hot News and by Facebook. Helen’s skills and experience as a financial controller have also been invaluable in recent months in the interim period whilst we recruit a new Finance Officer to replace Fay. Her help is much appreciated and we realise she wants to concentrate her energies on developing communications and fundraising in the future.

Anne Mawdsley MBE stood down as CEO at the end of last year and has a different role. Anne is our Welfare Officer and receives calls, letters and emails each day from patients who have questions about their condition, or indeed carers who have questions about the disease. Anne can allay fears and offer practical reassurance about medical treatments.

Anne Mawdsley MBE

Publication costs for this issue of Hot News are supported by GSK GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of GSK.

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Doc Spot Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

I have Raynaud’s and scleroderma and have been on the same medication for some time. Recently I have developed very painful mouth ulcers and wonder if there is a connection? I have reread all the patient information leaflets but I can't find any reference to mouth ulcers. Mouth ulcers are common but can occur as a side-effect of some medications given for scleroderma such as methotrexate (and other agents). I would recommend discussing this with your doctor – you may need a 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. Can Raynaud's affect the tongue? My tongue swells up and goes blue at times and I find it difficult to talk. It feels as though my tongue is shrinking. It is certainly possible for the tongue to be affected and this seems to occur in both primary Raynaud’s or in association with connective tissue disease. Blood vessel spasm in Raynaud’s can involve any of the vessels that respond to or regulate temperature and this includes the tongue (it is an important cooling device in dogs!). Raynaud’s therapies may improve these symptoms. The tops of my hands are very itchy and I get tiny hard spots, which are not visable 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. In the past I have experienced extremely cold fingers and toes and the symptoms have come back again this winter. They get really cold and tend to go numb, and then sometimes start to ache and cause me pain, not excruciating just very distracting. I've looked up the symptoms of Raynaud's and it has been suggested that I may have had it before now as the symptoms persisted. I do tend to get some colour change, although not as extreme as in photographs I have seen and more on my fingers. I was simply wondering if I should be considering Raynaud's or just put it down to bad circulation? Raynaud’s phenomenon is very common and the severity varies. Some patients are more affected by loss of sensation or numbness and the symptoms that you describe are quite typical although it would usually be asssocated with visible colour changes – often blanching (whiteness) occurs in association with numbness and blue or red discoloration with the painful phase of an attack. There are treatments for Raynaud’s, including vitamin (e.g. Vit C, Vit E) or nutrient supplements (e.g. ginkgo biloba) that can relieve symptoms (see the RSA website for more details). Some patients benefit from prescription treatments such as nifedipine. I have read in previous issues of Hot News that one should have an ANA (anti nuclear antibody) blood test if Raynaud's becomes severe or if you develop Raynaud's after

the age of 40. If this comes back positive does it always mean that you have scleroderma or can you have positive ANA and not develop scleroderma? Most patients with Raynaud’s phenomenon (RP) have “primary RP” that is not associated with any underlying disease. Some patients do develop a related condition, such as scleroderma or another rheumatic or connective tissue disease (secondary RP). Some cases of RP have positive ANA and this is associated with increased chance of developing an associated disease over subsequent years, but many patients do not develop scleroderma. Research studies suggest only about 10% of such cases progress to scleroderma. I have just undergone my first course of iloprost and wonder how long it takes before it kicks in? Iloprost is a synthetic form of the natural substance prostacyclin that opens up blood vessels and improves circulation. There may be some immediate benefit from iloprost during infusion but the maximum effect seems to occur around 6 weeks after treatment is complete. This is likely to reflect the beneficial effect on blood vessels and their lining cells (the endothelium). I saw a Rheumatologist recently about my possible Raynaud's, dry eyes and dry mouth. I have difficulty in swallowing. He has referred me to a Gastroenterologist and an ENT specialist about my swallowing problems. He has also suggested to my GP that he should put me on a drug called Thymoxamine for my peripheral circulation. Is this a common medication for Raynaud's? Thymoxamine is one of a number of drugs that can reduce blood vessel spasm. It was originally developed for high blood pressure and is in a class of drugs called “alpha adrenergic blockers” that block some of the effects of adrenaline. It is sometimes used in Raynaud’s although other agents such as nifedipine or losartan are also prescribed. It is often necessary to try several different medications to find one that works and does not cause significant side-effects. Many of the common side effects relate to lowering of blood pressure.

If you have a question you would like Professor Chris Denton to answer, please send to Head Office 04

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Self management NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free London

020 7472 6354

LOCAL CONTACTS Bedfordshire, Rita Boulton

01767 312544

Burton on Trent, Helen Nutland

01283 566333 ext 5247

Bristol & Bath, Margaret Goff Email: margaretgoff@hotmail.co.uk

01454 310225

South Cumbria/North Lancs, Ruth Randall Email: peteruth@talktalk.net

01524 903493

East Anglia, Jacky Marsh

01394 286637

Eastleigh, Kathy Allen

02380 610678

Fife, Rose Bevan

01382 552272

London, Ruta Rackaityte Email: rcktyt@yahoo.com

07702 245068

Manchester, Gill Holden

01942 877259

Merseyside, Helen Lingwood Email: jonandhel@sky.com

0151 280 1194 07751 333 633

North East, Jessie Pickering

01388 527840

North Yorks, Tony Overend

01423 862551

N. Ireland, Patience Bradley Email: patiencebradley@gmail.com

02890 592370 07966 416553

North West London, Marilyn York

01923 286780

Portsmouth & South Hampshire, Alison Wright

02392 367960 07986 900262

Surrey, Fay Collings

01737 762005

Worcestershire, Shirley Lynch Email: slynch@uwclub.net

01386 553392

(For Pulmonary Hypertension Enquiries)

Specialist Nurses Royal Free London

Sue Brown Bath

020 7830 2326

01225 428 823

Lynne Lister Chapel Allerton

07425 178 191

Liz Wragg Manchester

0161 206 0192

Specialist Nurse Leeds

0113 3923 035

Jan Lamb Liverpool

0151 529 3034

Karen Walker Newcastle upon Tyne

0191 223 1503

Audrey Hamilton Belfast

02890 561 310

Paula White & Julie Ingall Portsmouth

02392 286 935

Jayne McDermott Sheffield

0114 2713 086 (option 3)

Lucy Pigram Brompton

077588 943 175

Steve McSwiggan Dundee (Available Mon, Tues & Wed Mornings)

01382 383 233

The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice. The nurses who run the advice lines also have very busy schedules and therefore it is likely you will get an answerphone message where you can leave your details for the nurse to get back to you.

There is interest in a new group forming in Halstead in Essex. If you would like to be part of this group, or are interested in becoming a contact for your area, please get in touch on 01270 872776 or email info@raynauds.org.uk

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Natural Silver Fibre Natural Silver Fibre conventional products. Silver also has one of the lowest radiant heat loss rates and therefore keeps warmer for longer.

History of silver

Silver Fibre

Why use it in clothing? The Textile Fibre has a layer of pure natural silver permanently bonded to the outside surface. The process is such that the fibre, with its silver layer still retains traditional textile and tactile characteristics but has all of the benefits known to be inherent in pure silver. Natural Pure Silver minimises any radiative body heat loss by actively reflecting 95% of the body’s energy back to the skin. As the gloves contain natural pure silver they will keep your hands much warmer when compared to

The use of silver for its medical and therapeutic benefits dates back thousands of years. In fact, the Romans were the first to publish and document the “magical healing” powers of silver when used to cover wounds. Further, Cyrus the Great, in the 5th century BC, would only let his troops go to war if they carried water in silver vessels something he knew would keep the water supply clean and safe. It is somewhat humbling to know that a Persian King first touted the benefits of the active ingredient used in the silver fibre.

Silver in the 21st century Silver has been used primarily as an industrial and medical product for the last decade, servicing high-tech industries and the Department of Defence. More recently it has been

thrust more into consumer product markets as a result of the need for a safer and effective antimicrobial solution. Silver is used for its broad-spectrum antimicrobial properties in healthcare products ranging from bandages and plasters to burn care treatments to catheters—almost any product where infection control is critical. The majority of Americans are first exposed to silver at birth, when silver nitrate eye drops are used to prevent infection. Silver is also widely used for industrial applications, most notably in drinking water filters and swimming pool filtration systems.

Where can I buy silver socks and gloves? Visit our online shop at http://www.raynauds.org.uk/shop to view and buy our range of products that may help to keep you warm. We welcome your feedback on how effective the products are. You can email your comments to info@raynauds.org.uk

Karen’s Top Tip

Customer feedback

“Before putting gloves or socks on to wear, warm them on a radiator or overnight in an airing cupboard to gain the most out of your product.”

I’d like to take this opportunity to say that I have suffered from Raynaud’s for years and it was becoming increasingly difficult to do my job working in a small supermarket because of the pain experienced working the chilled and frozen sections and on the checkouts. I was sceptical about the silver gloves helping much, but have been amazed at how much difference they make. I can now work on the chilled and frozen sections with little or no discomfort and my fingers feel less stiff than previously. I’m really pleased with this product.” Patricia Jones.

Customer feedback

Reader’s Top Tip

“A few months ago I ordered some of your long diabetic socks for my husband. You very kindly ordered the larger size to fit size 11 shoe and he has found them really helpful. One of our daughters suffers from Raynaud’s and this winter being so bad my husband lent her (never to return) a pair of socks and a pair of gloves. I am ordering them both some more gloves and socks. May I say the gloves are wonderful, my husband wears them all the time as he has no feeling in his hands due to Peripheral Neuropathy and burns his hands on hot cups. Using these gloves has reduced this risk very much.” Sandra Parsons .

Jim Hooker recommends wearing wrist warmers as an aid to warding off the dreaded “shutting down” of the fingers. Says Jim ‘They bridge the cold gap between gloves and a jumper when out and about and help insulate a high heat loss area when indoors; I am wearing mine as I write this message. I have them in a variety of colours to blend with different coloured jumpers.’ Here at the office we have pairs of wristwarmers in various colours. If any one would like two pairs, please send a cheque for £2.50 to cover the postage costs, made payable to the RSA Trading Co Ltd.

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Try new products Calling those of you in Cheshire and North Staffordshire Opportunities to test and trial some products to help us find what is right for YOU! Here at the RSA we are frequently approached to ‘trial’ goods of potential benefit to Raynaud’s sufferers – whether associated with scleroderma or for those suffering with the effects of extreme cold. Soon after I started a complete Duvet Suit (like the current fashion for a ‘onesey’…but more puffy) arrived to be tested…soon followed by some insoles, and more recently, Possum fur gloves (gorgeously warm and stylish). We are keen to pull together a group of Raynaud’s & scleroderma sufferers in the South Cheshire/North Staffordshire area on whom we may call, who are prepared to help us trial products and feedback to the RSA team on how helpful, or otherwise, they have been. If you are interested and live in the Cheshire or North Staffordshire area and can arrange to visit the office in Alsager, please contact us with your details by email info@raynauds.org.uk with ‘Trial’ in the subject line; or send a letter saying you would be interested in helping us trial products; or leave your details on the RSA 0800 917 2494 number, stating you have an interest in ‘trialling’ – again leaving your details, including email address. Looking forward to hearing from you.

RSA Online Shop – set for expansion! Many of you are familiar with the offerings of the RSA online shop and have experienced the benefits of silver fibre yourselves in helping retain heat in your fingers and toes when you have purchased our metallic gloves and socks. TDS Healthcare, the producers of these silver products have previously sold their range directly to the public, so these products were available from two sources in the UK – Raynaud’s & Scleroderma Association and TDS Healthcare. We are pleased to announce and celebrate the generous offer made by TDS Healthcare, to automatically redirect those seeking to purchase silver gloves and socks in the UK from the TDS website to the RSA online shop site www.raynauds.org.uk/shop This generous donation from TDS will help boost the amount the RSA raises towards research into both Raynaud’s and the rheumatic connective tissue disease, scleroderma – one of a range of auto-immune diseases that rheumatologists across the world are striving to better understand, develop better management techniques for - and ultimately to cure. Thank you Terry and all at TDS Healthcare! Looking to expand the range of products available for sale to members and those who just want something warm and stylish, Karen is set to blaze a trail to a couple of exhibitions in search of the new and innovative, the stylish and well-made, the durable and the useful to bring to you all in future.

Green Help

New for 2013 are our sock and glove bundles (pictured below). Available to order now! Don’t forget to add £4.00 post and packaging.

£38 £17

Turtle Doves are wrist warmers and fingerless gloves rolled into one. They’re designed to be worn on the wrist all day helping to keep your wrists and hands warm. Made from recycled jumpers, they are environmentally friendly and not only do they look and feel great but they are practical too. Every pair of Turtle Doves is unique; they come in all the colours of the rainbow... but they’re all green! Prices range from £10 plus £2 p&p For further details or to place an order visit: www.turtle-doves.com or call 01743 344702.

£30 £19

Anne’s Tip - These fingerless mittens are really comfortable and have an added bonus. Instead of taking them off, leave on all day by using as wrist warmers and by slipping out the thumb, you can then put a thicker pair of gloves or mittens over the top.

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Juicing Epiphany

Nikki Whitehill

Nikki Whitehill is keen to share her positive experience of the benefits of fresh juices. Naturally, the RSA cannot promote the use of specific products, but does recommend a nutritious balanced diet with adequate vitamins and minerals to help maintain the body’s immune system and suggests you talk to your GP about any diet plans you may have. The following is Nikki’s personal story …

“In September 1997 I was officially given my systemic sclerosis and Raynaud’s diagnosis. Thereafter the roller coaster journey began. Those on a similar diagnostic life ride will understand the numerous implications involved with this journey. After more than 10 years of taking a cocktail of immunosuppressant drugs, as well as spending most of last year on antibiotics for digital ulcers on my fingers, I reached a turning point in December 2012. My diet had gradually decreased in variety, as well as quantity since first diagnosis, mainly due to the ongoing changes with my gastro intestinal (gi) tract and almost everything I consumed induced painful acid. Well, after another seven days laid low with a virus, my epiphany moment came. I had had enough of constantly feeling lethargic, sluggish - not to mention the chronic pain piercing my musculoskeletal system from year to year. I researched into buying a juicer. I had read in numerous articles the benefits of juicing and going on a ‘raw’ diet, but had casually dismissed them, telling myself ‘that could not be for me as my acid would love the reinforcement!’ But having spent another week of my life in my bed courtesy of being ill, I was ready for anything which would make me feel better. I went onto Jason Vale Juicemaster’s website (juicemaster.com), took the plunge, ordered and was the proud possessor of my juicer the following day. Although the plan promoted weight loss, this remains completely immaterial as my main priority was - and is - to introduce fresh, wholesome nutrition into my body, detoxify it and help restore myself to a state of health and well being! Once started on the 7 day plan, by day 2 I felt a difference. By day 7 my energy levels had increased dramatically, although I was looking forward to eating some solid food again! At the time of writing this I am on Day 36 of incorporating fresh juice mixtures into my daily diet. The constant sluggishness which I had been feeling for years, has dramatically reduced and although my Raynaud’s limits me with my trips out and about, it is just great to feel better! What I perceived as my ‘muffin 6 pack top’ has also become a shadow of its former self but that wasn’t the point of the exercise! “My daily breakfast routine now comprises muesli (no sugar added) with unsweetened soya milk, followed by a home-made ‘smoothie’ of grapefruit, pineapple, orange, apple and probiotic natural yogurt with banana and blueberries. Jason’s book suggests grapefruit helps reduce calcium deposits - a huge challenge for me as a systemic sclerosis sufferer over the last decade, including the scarring that results. Time will tell if Jason’s belief is correct!

During the day I take a ‘super green juice’ of pineapple, cucumber and lime blended with wheatgrass powder, spirulina and a high strength pro-biotic capsule. Surprisingly the resulting intense green coloured liquid is quite pleasant. But having been a ‘snake bite and black’ girl for a while at university, I had inadvertently and unknowingly prepared myself for such an experience! My other meals will now include white meat or fish accompanied with a variety of steamed vegetables or a turbo salad, with everything that takes my fancy from the salad bar. I no longer eat bread or yeast products and my sluggishness and ‘bloated’ feelings have subsided. I start my day with hot water and a slice of lemon or mint tea but I admit to succumbing to the odd cake and chocolate here and there, after the first 7 days of intensive ‘juice therapy’. I am not sure if I have lost weight - I do not possess a set of scales. However, I feel more toned and my skin seems softer! “So, readers, I still take medication for Raynaud’s as well as Omeprazole for any gut problems although the ‘gi’ problems, mainly acid, have certainly improved during the last 5 weeks! “It remains my quest to improve my health and pursue ‘feeling good’ – I’ve still got dreams to fulfil whatever my medical diagnosis has been. Remember this is my experience of juicing – and “no” I haven’t any financial interest in Jason’s company but if you decide to try juicing, I hope you have positive results and increased energy levels to help you reach for those stars.” Good luck Nikki – we at the RSA wish you well with your quest and look forward to hearing how you progress over the coming months.

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Recent developments Raynaud’s In 1862, Maurice Raynaud recognised the phenomenon that carries his name. Raynaud's phenomenon is, at its most simple, an exaggerated 'normal' response to cold, with the fingers classically turning white (due to poor blood flow), blue (as oxygen is used up) and then red (as the blood rushes back in). The Raynaud's is considered primary when it is isolated, and secondary when it is due to underlying disease such as scleroderma. In primary Raynaud's the mainstay of treatment is keeping the hands warm. When medication is required, calcium antagonists such as nifedipine or amlodipine are the drugs of first choice. Several other drugs have been tried but a recent review of all studies found little evidence of benefit. However, primary Raynaud's rarely causes ulcers or gangrene. As many readers will know, in patients with scleroderma, Raynaud's phenomenon can be very severe. When studied under the microscope, these patients do not just have the exaggerated 'normal response' to cold with narrowing of the arteries in the fingers. Our blood vessels are lined with a layer just one cell thick, the endothelium. Over the last ten years or so we have come to appreciate how important and active this extremely thin layer is. Far from being 'just a lining', these cells monitor the passing blood and orchestrate the response of the blood vessel deciding when to be leaky and when to be water-tight and crucially, when to signal that the vessel should widen (dilate) or narrow (constrict). This signaling is impaired in scleroderma. The endothelium releases too much 'constrict' signal, called endothelin-1, and not enough 'dilate' signal, nitric oxide. There is a lot of interest, and there have been several trials, in prescribing drugs which interact with these signals. The endothelin-receptor blocker bosentan has been tested in two randomised controlled trials and is licensed “to reduce the number of new digital ulcers in patients with systemic sclerosis and ongoing digital ulcer disease”. The major drawback is cost at over £20,000 per year, which few primary care trusts can afford. However, the problem in Raynaud's due to scleroderma, is that over time there are structural abnormalities in the blood vessels. This can be seen with a microscope in the small vessels at the nail-fold. The lining of the arteries thicken, and they are no longer able to dilate so well. The smaller vessels reduce in number and become thickened too. Another avenue that is being explored is using drugs such as sildenafil and tadalafil. While these were originally developed to help men with erectile dysfunction, they have been shown to 'open' blood vessels elsewhere in the body. Although these drugs are not licensed for treatment of severe Raynaud's phenomenon, there is reasonable evidence that they can be helpful and can improve ulcer healing in severe cases. A randomised controlled trial, the suggestively named 'seduce study', is currently underway in France. Although they are expensive, many GPs can prescribe a short course for a few weeks which can be helpful in treating a nasty ulcer which is taking its time to heal.

Well, despite being a very rare condition scleroderma continues to attract a lot of interest from clinicians, academics and the pharmaceutical industry.

Scleroderma Over the last ten years or so, we have seen real developments in the management of some complications of scleroderma - notably pulmonary hypertension and Raynaud's phenomenon - but we have not yet seen the major breakthroughs that we are all waiting for. However, the good news is that this is an active field. A quick search in www.clinicaltrials.gov reveals 53 active registered studies in scleroderma. Lung disease: The Scleroderma Lung Study, which was an important study testing intravenous cyclophosphamide, a very potent monthly infusion, for patients with lung fibrosis, is being rerun in the United States, this time against another drug, mycophenolate mofetil. New drugs, including a thalidomide-like drug, are being investigated. Others are exploring the role of reflux in lung disease and the benefits of N-acetylcysteine, an anti-oxidant. Renal crisis: A randomised trial is testing the effects of bosentan in renal crisis. This drug has already found a role in the treatment of pulmonary hypertension and digital ulcers. Skin: A new agent, an anti-TGF beta drug fresolimumab is being tried in Boston in a phase I 'first time in man' study. Another 'proof of concept' early study is looking at a new drug, currently with only the rather unglamorous name SAR100842, which has a new target in the immune system. Gut: The use of probiotics is being studied to see if it helps abdominal bloating. Several new drugs which already have a role in other autoimmune conditions are now being tested in scleroderma. This category includes tocilizumab, rituximab and belimumab. These synthetic antibodies target specific parts of the immune system which have been used in rheumatoid arthritis and lupus. The most radical treatments are the stem cell therapies. These brave investigators and patients are treating patients with a very aggressive treatment aimed at 'rebooting' the immune system. The stakes are high as the treatments are toxic, but these studies are striving for the holy grail of cure, no less. There have been individual success stories which are really striking and gratifying, with complete remission of disease, but the treatments so far have been quite risky, and the treatment algorithms are being refined. The field is steadily progressing, and I can't help but feel that major breakthroughs are around the corner. Whether it will be the more precise, laser-guided weapons for targeting individual aspects of the immune system or the 'carpetbombing' methods of stem cell transplant therapy which win the day remain to be seen but the good news is that the race is on! Benjamin Schreiber (ROYAL FREE LONDON NHS FOUNDATION TRUST) January 2013

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Fundraising

The Harbour Ladies (left to right) Donna Taylor, Samantha Hayne, Leah Lancaster, Janice Bown, Joan Tyson and Karen Tyson who are involved in all sorts of activities have forwarded £200 to us. Thank you ladies!

A fundraising picnic was held late last Summer featuring talented local music students performing a varied musical programme which appealed to all ages. This event raised £475 and was arranged by Ruth Banszkiewicz. A musician playing at the event is pictured above.

Joyce Dimelow personalised her RSA top for the Blackpool 10k FunRun to raise £203. Great idea for her grand-daughter Kerry.

Brothers Karl & Noel Hodgson have taken part in sky diving and a Tough Mudder event to raise £2,000 for the RSA. Well done guys!

Karen Cox completed the Clarendon Half Marathon on 7th October in just under 2.5 hrs. It was very tough thanks to mud and lack of sufficient training (due to caring for Mum). Sadly, her dear mum has since passed away but would be very proud to know that Karen has raised £1,145 to date.

A raffle raised £43 from a Knitting Club in Great Yarmouth! Thanks to Sarah May and Patricia George for this inspiring picture.

Sylvette Wood took part in the Moor Park 10k run to raise £305. Pictured here proudly wearing her RSA top!

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Fundraising Raffle 2012 Update

Pictured left to right are: Sam Wilkinson, Dr Gillian Scragg, Anne Mawdsley, Liz Bevins, Karen Littley

We are pleased to announce that our annual raffle raised over £6,000 for the RSA. A local GP, Dr Scragg came in to the office to draw the tickets. Your support is greatly appreciated in selling the tickets, especially in the current financial climate, but every ticket sold does make a difference.

We are still counting up your donations towards the Cool Million Appeal until 31 March 2013 so please keep on giving generously until then. Debbie Pentland leads the way in Tai Chi classes and encourages members to fill their Percy boxes and have recently forwarded £153.

A polite request Image by: kulich / Shutterstock.com

Thank you to:

We at the RSA office are aware how kind you have been in the past sending used stamps to us but unfortunately we have no longer have a skilled and generous philatelist to help sort and sell the stamps you are sending. Unfortunately, it costs more for you to send your stamps than we can make from them and made worse for the RSA having to pay an extra pound in handling to Royal Mail when postage is insufficient and we need to drive to Kidsgrove to collect the parcel! So can I ask that you donate stamps to alternative organisations, close to where you live, rather than send them to the RSA, who currently have no facilities to sort and sell them. If you are a keen philatelist, reading this article, with outlets to sell onwards on behalf of the charity, then RSA would love to hear from you. Please contact us with your details by email info@raynauds.org.uk with ‘stamp sorting and re-sale’ in the subject line; or send a letter saying you would be interested in helping with stamp sorting and selling; or leave your details on the RSA number 0800 917 2494 number, stating you have an interest in ‘stamp sorting and re-sale’ – again leaving your details, including email address. Many thanks.

Kevin Ferguson and Lisa of Louth Co-op for letting Elenid Matthews do a tombola in the front of the store, thus raising awareness for Raynaud's and scleroderma. On a very wet day in December they made £80 which was very good. In total for 2012, they have raised £500 by selling card making materials. Also a great big thank you goes to all the Lincolnshire people who over the year have given us support.

and also The Ship Inn Lin Ford Burnham Rotary Club Middleton Hall Golf Club Brian and Jan Roberts Eugene O’Sullivan Ron & Iris McMillan who have raised a fantastic £2,205 by taking part in the Charity London Royal Parks Walk together with members of the Brixton Ramblers Lodge No.3347.

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Did You Know? Definition of Disability under the Equality Act 2010 You are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. The Equality Act 2010 doesn’t apply to Northern Ireland. What ‘substantial’ and ‘long-term’ mean ‘substantial’ is more than minor or trivial - e.g. it takes much longer than it usually would to complete a daily task like getting dressed ‘long-term’ means 12 months or more - e.g. a breathing condition that develops as a result of a lung infection There are special rules about recurring or fluctuating conditions, for example, arthritis. Progressive conditions A progressive condition is a condition that gets worse over time. People with progressive conditions can be classed as disabled. However, you automatically meet the disability definition under the Equality Act 2010 from the day you’re diagnosed with HIV infection, cancer or multiple sclerosis. What isn’t counted as a disability? Some conditions aren’t covered by the disability definition. These include addiction to non–prescribed drugs or alcohol. For more details on the above, download the ‘Equality Act Guidance’. www.gov.uk/definition-of-disability-under-equality-act-2010

Planned Changes to Disability Living Allowance As you know, the Government is making a number of changes to the benefits system and we thought it would be helpful to make you aware of planned changes to disability benefits and, in particular, to the Disability Living Allowance. Personal Independence Payment (PIP) From 8 April 2013, the Department for Work and Pensions (DWP) is introducing a new benefit called Personal Independence Payment or 'PIP' for short. By the end of 2016, PIP will have replaced Disability Living Allowance (DLA) for disabled people aged between 16 and 64. Although we do not yet know everything about PIP, below is some information which may help. PIP is a new benefit to help disabled people with the extra costs of being disabled. As with DLA, PIP will have two components: a 'daily living' component and a 'mobility' component. Each component will have two rates of payment: a 'standard' rate and an 'enhanced' rate. By using the ‘enhanced’ rate of PIP, you will be able to lease a Motability car. PIP will not be means-tested or taxable, and can be paid whether you are working or not. Who will be eligible for PIP? PIP will replace DLA for disabled people aged between 16 and 64, even if they currently have an 'indefinite' or 'lifetime'

DLA award. Disabled children will continue to receive DLA until they reach the age of 16. DLA will also continue to be available for those aged 65 and over At the time of going to press, the DWP had not yet finalised the detailed rules and assessment processes for PIP. However, the eligibility criteria for PIP will be different from those for DLA today and existing DLA recipients will not automatically be transferred across to PIP. This means that even if you already receive DLA, you will need to make a claim for the new benefit when DWP invite you to do so at some point between 2013 and 2016. DWP will then assess your claim and decide what level of PIP benefit you should receive. You do not need to do anything now but wait until you are contacted by DWP. We know that many of our members will want to know how the application process will work and what rules DWP will apply to decide the level of PIP benefit awarded to each individual. You can find out more by visiting www.dwp.gov.uk/ policy/disability/personal-independence-payment/

Financial help if you're disabled VAT reductions on equipment You don’t have to pay VAT on certain goods and services if they are just for your own use and you are disabled or have a long term illness. What you need to do to get VAT relief You have to give the seller a written declaration that you are entitled to buy the goods without VAT. This has to give enough information to show that you qualify. If you can’t sign the written declaration yourself, the signature of your doctor or another responsible person can sign it instead. Faxed declarations and declarations made via the internet are also acceptable. Normally, the supplier will provide you with the declaration for you to fill in and sign. The supplier will also have to complete part of the declaration and keep it with their records.

We Are Here For You! This will be a regular page in Hot News so if you have any questions regarding practical help, benefits, gadgets etc. or have ideas to share with other members on coping strategies, just let us know. Having experienced most of the symptoms of Raynaud’s and scleroderma myself for over 30 years I really do understand how frustrating it can be. As always, I am happy to talk to members on the telephone, either to help answer queries, offer advice, to reassure, or just to listen if you want to chat. Call the office on 01270 872776 and if I am not there, leave your number and I will ring you back or they will tell you which days and hours I will be in the office. Alternatively you can write or email me anne@raynauds.org.uk Anne Mawdsley Welfare Officer

PUBLISHED BY RAYNAUD’S & SCLERODERMA ASSOCIATION

112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk Charity Reg. No. 326306