Hot News Spring 2015 by DMMonline

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Hot News Issue No. 129

Volume 1 2015

Scleroderma & Raynaud’s Unveiled Annual Conference 2015 Saturday 20th June

In this issue...

Barnes Wallis Building & Macdonald Hotel, Manchester We are delighted to announce that this year’s conference will be held with The Scleroderma Society on Saturday 20th June in Manchester! This year’s theme, UNVEILED, aims to reveal treatments and topics to help those with the conditions, share information, hear about the latest news and research into the conditions, learn some self management tips and techniques, and experience some treatments whilst enjoying yourselves by catching up with old friends . . . and making new ones.

Breastfeeding with Raynaud’s Page 7

We are delighted to host internationally-renowned speakers, including Professor Ariane Herrick and Professor Christopher Denton, and we also have a series of engaging talks during the day about both conditions, how children and young people are affected and a session on shared decision making with, and for, the patient. You will have opportunities to talk - and find out more about digital ulcers, skincare, gastrointestinal tract, nutrition, pulmonary hypertension and breathlessness. An interesting session looking at research, future treatments and emerging therapies will bring us up to date with the latest thinking. In addition, a range of experienced Doctors, Clinical Specialist Nurses, Allied Health Professionals and Practitioners within the field of scleroderma and Raynaud’s are joining us and will be on hand throughout the day.

Doc Spot Page 8

During the lunchtime break, you can explore and try out a range of practical sessions in skincare. Keith Hunt MBE, massage therapist, will be joining us along with other exhibitors with hints, tips and products designed to help you. This year the conference is FREE to members of the RSA & The Scleroderma Society, and costs just £20 to non-members. We would also like to invite you to our Gala Dinner at The Macdonald Hotel. The dinner will give you an opportunity to reflect on the day and enjoy meeting others in an informal setting. There will be some light entertainment from 7pm, and a 4 course dinner before the charities give out a number of awards in the following categories: volunteer of the year; local support group of the year; fundraiser of the year; supporter of the year; supplier of the year; and World Scleroderma Day art competition winner.

Remembering Anne Page 9 - 12

Tickets for the Gala Dinner are priced at £40 per person We would be delighted if you would attend! Please go to www.raynauds.org.uk to find out more information, download the latest programme of events and book your place. Alternatively, use the booking form enclosed and return it to the office, or call the office to pay with a debit/credit card. Walking the Inca Trail Page 13

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Chief Officer Update the development of scleroderma, and the activity and pathways of these different proteins including antibodies. Clinicians are seeking to block certain ‘pathways’ to inhibit the disease and manage it more effectively. More research is needed and more investment in raising awareness about Raynaud’s and its potential associations with connective tissue diseases and, importantly, with scleroderma – the disease with which secondary Raynaud’s is most commonly linked. Elizabeth Bevins

Dear supporters of the charity As you receive your latest copy of Hot News, the daffodils should be in full sway and blossom burgeoning together with the new tender green shoots of spring – a picture of hope: delicate and almost fragile in appearance but with the promise of vigorous growth, maturity and the bearing of its fruit in time. By now you will be aware of the combined efforts of staff and trustees at both the Raynaud’s and Scleroderma Association and the Scleroderma Society to work more collaboratively, with the aim of using limited resources more effectively, thereby reducing confusion amongst those who need help and support from the charities and avoiding duplication of effort. Dame Professor Carol Black, Professor Christopher Denton and Professor Ariane Herrick – leading lights in the work of scleroderma and Raynaud’s – have endorsed and welcomed such collaboration. The analogy is that this work is also ready to burst forth and ‘bear fruit’ too and, with your support and help, these embryonic new shoots will emerge as we work towards forming a new charity to help those with the conditions of Raynaud’s and/or scleroderma, which remains one of the rarest and most enigmatic of the autoimmune connective tissue diseases. You will recall recent editions of Hot News that explained how the World Congress had grown and how much more research was being conducted in the UK, as well as collaboratively between colleagues and institutions across the globe. We now know more about the different factors (including different proteins) which are associated in

Raynaud’s Awareness Month was held in February and we’d like to thank all of you who made good use of the ‘Love your Gloves’ campaign posters by placing them in public places – your GP surgery, local hospitals, community centres, dentists, schools, colleges…the list of possibilities is almost endless! We were mentioned in various newspapers and magazines, including The Sun, Daily Mail and Waitrose magazine. To mark Rare Disease Day on 28 February, The Independent newspaper contained a supplement about genetic diseases in which Dr Julia Coakes (who gave a patient perspective at the RSA conference last year) wrote a moving and inspirational article about living with digital ulcers, severe Raynaud’s and scleroderma. Both the RSA and the Scleroderma Society promoted themselves alongside Julia’s story. On the political activity side, things are also developing at the RSA. In January, I briefed Fiona Bruce (MP for Congleton) who supported the RSA, once again, this time by speaking in a cross party debate in Westminster Hall about the importance of maintaining a national perspective for Specialised Services for Rheumatology. We have also invited your comments on the NHS England consultation about the Digital Ulcer Policy and, to help you understand the role of Clinical Reference Groups, Nikki Whitehill has provided an article explaining her current experience as a patient representative. In November, Harry Mawdsley and his family held a service to celebrate the life and achievements of Anne Mawdsley MBE and we have dedicated a ‘pull-out’ section to this, which includes contributions made on that

day. Staff from the RSA joined family, friends, clinicians and colleagues to celebrate Anne’s life and all ‘in memory’ donations were most generously given to the RSA, for which we are incredibly grateful, thank you. The office in Alsager is going to be officially ‘Mawdsley House’ so please include the name in any postal correspondence in future. We have heeded feedback from last year, and the Annual Conference this year will be a joint event between the RSA and the Scleroderma Society, held in Manchester on 20th June, a date as close to World Scleroderma Day as we could manage! Tracey Spray from the RSA and Chloe Kastoryano from the Scleroderma Society are project managing the event so I know it will be a professional, as well as an enjoyable and interesting, time - whether you are spending the day with us, or making a weekend of it. Travel logistics should be simple as the Barnes Wallis venue and the Macdonald hotel are both very close to Piccadilly Train Station and the bus station, and those of you who intend to fly can catch a train directly from Manchester Airport to Piccadilly. Lastly, the RSA Annual Raffle is upon us once again and we hope that as many of you, who are able and willing can contribute, yet, if you do not wish to participate, please recycle them, if you can, in the interests of the environment! We have various fundraising challenge events that you can approach us to take part in - or you can organise your own challenge - from cake sales to bike rides, all are welcome - please take some photos of the event and share them with us . . . I hope you enjoy the newsletter and its contents - a reminder, please, if you have a paper copy, share it with others to ‘raise awareness’, thank you.

Elizabeth Bevins

Chief Executive Officer

Spring is well and truly on its way, which is great news for not only those with Raynaud’s, but also for the keen gardeners amongst us! Soon we will be caught up in the madness of seed sowing, growing and nurturing your garden as it springs back to life after the cold winter months! It is the time to have a general tidy up, hunt down those pesky garden pests, prepare the green house and order your bulbs and seeds. If you shop online for your gardening goods, have you thought about doing it through Give as you Live (www.giveasyoulive.com)? It is free to sign up and you just use it as a portal to visit the online retailer, who will then donate up to 5% of your purchase to your chosen charity. Garden retailers who have signed up to Give as you Live include Thompson & Morgan, B&Q, Homebase, Dobbies and birdfood.co.uk. We would truly appreciate your support and happy gardening!

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News 29th June is World Scleroderma Day (WSD), and this year the theme is ‘Unveiling Scleroderma’. The RSA is partnering with FESCA along with many other international patient groups to launch a worldwide campaign for WSD. French Film FESCA will be launching a website for WSD where a new film will be shown created by the French patient organization ASF. Can anyone help us to share the footage? Hands Up To Help On the 29th June FESCA will be launching a showreel comprising 25 videos made by people affected by the condition from all over Europe. WE NEED YOU! The RSA would like you to help us ‘unveil scleroderma’ to the world by recording a 25 second video about your experiences of living with the condition and how it affects you. We’ll share it with our own social media community and the chosen clips will ‘tour Europe’ and end up on the video wall of the WSD website. To help you to with your ‘selfvid’, we’re giving away 10 selfie sticks to the first supporters who contact us at info@raynauds.co.uk. For more information go to www.raynauds.org.uk/WSD Parliamentary Presentations On the Tuesday 30th June, FESCA will be heading to European Parliament in Brussels to ‘Unveil Scleroderma’ to MEPs. The members will hear from patients with scleroderma, specialists who treat the condition and key patient organisations. The aim is to challenge equality for rare diseases. We also have our Annual Conference, this year being held on Saturday 20th June, in Manchester. If you missed the details on our front page, please go to www.raynauds.org.uk/conference2015 for more information. Whittle, Sculpt, Draw for WSD! We are also joining ‘creative forces’ with the Scleroderma Society and holding an art competition this year following last year’s success. This year we would like your art work to reflect the WSD 2015 theme ‘Unveiling Scleroderma’ and you can be as creative as you like! The winner will be announced at the Annual Conference gala dinner. Send your photograph, painting, drawing or even sculpture to: Art Competition, The Scleroderma Society, First Floor Bride House, 18-20 Bride Lane, London, EC4Y 8EE. The deadline is Wednesday 20th May. Alan Brain, contemporary artist & teacher, will be judging the competition, as he is a supporter of the cause. You can find out more about Alan and his wonderful gallery filled with fantastic works of art, at www.alanbrainart.com

We are delighted to be running our 2015 National Raffle! Show your support for the RSA by either buying or selling our raffle tickets. First prize this year is two tickets to a cricket match at Old Trafford with one night’s accommodation and dinner. Other prizes include a meal for two at the Rembrandt, London, various Portmeirion china, a tour of Anfield, an Emma Bridgewater factory tour and cake, vouchers and lots more prizes! We have included a couple of books of raffle tickets with this newsletter, for you to either buy yourself or to sell on. We appreciate that you might not be able to sell these, however, we can save on postage costs by including tickets with your Hot News. As you can appreciate, being a small charity, we need to save on costs wherever possible. If you cannot sell the tickets, please either pass them on to someone who can or recycle them locally. The tickets sell for £1 each. The buyer fills in their details on the slip, and keeps the main part of the ticket. You post the stub, with the buyer’s information on, back to us with a cheque for the money, made payable to “RSA.” Don’t worry if you don’t sell all the tickets, please just post whatever you manage to sell back to us. If you would like more tickets to sell, please get in touch with head office and we would be delighted to post more out to you. The closing date for the raffle is 31st May. All ticket stubs will be entered into the draw and we will ask someone external to the RSA to pull out the winners at our conference on 20th June 2015. We will then contact all winners directly and announce the full list of winners in the next edition of Hot News. Thank you to everyone who enters and more importantly, good luck!

Last year’s Cumbrian Cottages voucher prize was won by Judith Goodman, who decided to donate it to a friend. They booked a cottage in the coastal town of Sliloth, with views across the estuary to Scotland. They hiked every day and got some stunning photos, as you can see. Huge thanks to Cumbrian Cottages who kindly donated the prize!

Cockermouth

Keswick

The Cottage

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Awareness Month Lovely Glovelies! During the month of February, which is statistically the coldest month of the year, we celebrated Raynaud’s Awareness Month. The 2015 theme, Love Your Gloves, asked supporters to raise awareness through their gloves by various means. The Raynaud’s Awareness Month campaign highlighted the problems associated with Raynaud’s, which affects up to 10 million people in the UK (that’s 1 in 6 of us!), and Raynaud’s hints and tips were given daily on our social media pages. Many of you helped raise awareness by putting up posters in your local doctors surgery, hospitals and community centers, followed and retweeted us on Twitter, and helped to give us a 21% increase in Facebook supporters during the campaign. The girls in the office sent over 150 awareness packs out to you and various health care centres. Our info email address and social media pages were inundated with questions, queries and general support messages. A HUGE THANK YOU to all those individuals who helped us create this awareness and help raise vital funds for research into treatments, without your support this wouldn’t be possible. Our message was clear… ‘PLEASE DON’T IGNORE COLD HANDS’. We portrayed your stories and shared your experiences from Hastings to the Highlands! Tracey McKelvie shared a moving account of suffering with Raynaud’s since her 20s, Laurie Hughes, mum of Gracie, aged 2 ½, shared her journey in the clinical world, whilst getting Gracie a proper diagnosis, and our campaign continued with Caroline Goldstein, who was misdiagnosed with thrush whilst breastfeeding her baby, when all along it was Raynaud’s of the nipples - something that is all too common and one of the reasons why new mums often don’t persist. Read her full story on page 7. Some of our products (available at rsa-shop.co.uk), which have been tried and tested by you with encouraging results, have been featured in The Sun. We’ve had lots of editorial on Raynaud’s Awareness Month from Chat magazine to The Telegraph and various online coverage all across the globe from Ireland to Iowa! Of course now February is done and dusted and we all look forward to warmer Spring climes, but we are still appreciative of your support in raising awareness and sharing your stories, so sign up at @raynaudsuk on Twitter, ask a question on the subject at info@raynauds.org.uk or take a look at our online shop to ensure you stay covered and warm whatever the weather. Even in the warmer months of the year, those with Raynaud’s still need to Love Your Gloves!

Raynaud’s awareness was spread in publications worldwide, including the Sunday Post (left) and Waitrose magazine (right)

BRAVE SHAVE Before, after and Mathew Barry, a 15 year old boy from Hastings, has Mathew’s souvenir raised over £1,500 by shaving his head. He cut off his glorious locks down to a number 1 in order to raise both awareness and funds for us. Mathew was diagnosed with scleroderma when he was 9 but has suffered with Raynaud’s since he was 4. Both of these conditions affect him on a daily basis, causing achy joints, fatigue, muscle wastage and swallowing problems. It is rare for Mathew to make it through a whole week at school. His Raynaud’s causes ulcers on his fingers that are incredibly painful. Mathew’s older brother made an incredibly inspiring and moving video of the brave shave which can be seen here https://www.youtube.com/watch?v=ruIPviS9bjM If you would like to donate to Mathew’s page it can be found here: https://www.justgiving.com/J-Barry1/ Thank you Mathew!

Why do we want to spread awareness? Raynaud’s is such an underdiagnosed condition as many people aren’t even aware there is a condition for cold hands, let alone know what it is called! Even when someone hears about Raynaud’s, there is still such confusion over it, particularly with its name! Below are just some of the spellings which have been received on letters and emails arriving at our office since the RSA began!

Reynaud’s Renaults Rayners Rainards Raynords Rhinos Reynough Raynodes Rhenaudse Reins Raynubeux

Ranos Rynauds Rainoids Reynose Raynous Raynow Raynose Raenos Raynows Rhynos Reinauxs

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Research Update Here at the RSA, we are delighted to be funding a research trial at Nottingham Trent University into new gloves for Raynaud’s sufferers. Cutting-edge textile technology from Nottingham Trent University is being used to develop gloves which can help alleviate the pain caused by Raynaud’s phenomenon. Raynaud’s is a debilitating condition, affecting 5-10% of the general population, which causes interruption of the blood supply to the extremities, such as the fingers and hands, making them feel extremely cold, turn white and triggering intense pain. Heated gloves have shown to help alleviate the pain and are prescribed on the NHS but tend to be cumbersome, uncomfortable and often impractical because bulky heated elements are sewn into the gloves. That is why Nottingham Trent University’s Advanced Textile Research Team, led by Professor Tilak Dias, is working with medical consultant and Raynaud’s research specialist Dr Marina Anderson to develop a glove in which the heating elements are actually integrated into the knitted structure of the glove, allowing them to be extremely thin and practical. This technology also means the gloves are flexible enough to allow the wearer to operate a mobile phone or cashpoint and handle small change – all activities which are difficult or even impossible with current products available. It also means the gloves are fully washable and look appealing. Professor Dias said: “Now is the time to introduce state-of-the-art, fully textile-based heating zones where the fibres themselves provide the heat in a controlled manner. Development of reliable heated gloves that are lightweight, thin, flexible, washable, easy to put on due to the inherent stretch, allow excellent dexterity and grip, incorporate only a small lightweight battery with excellent battery life and are aesthetically pleasing will empower people to manage their Raynaud’s phenomenon at home.” The project has received £128,182 of funding over two years from the Raynaud’s and Scleroderma Association which will allow the team at Nottingham Trent University to work with patients attending Dr Anderson’s Raynaud’s clinic at Aintree University Hospital, Liverpool, to design the gloves according to wearers’ needs. By working with design groups, which will include those patients at the clinic with the condition, the researchers will have a better understanding of where heater zones should be placed within the gloves to promote the best blood flow to the fingers. The team will then produce a range of gloves with heater zones of different sizes and locations to be trialled by the group. Dr Anderson said: “The aim is for the finished product to have a relatively low manufacturing cost so that it is value for money for the NHS to prescribe and people to buy.” Liz Bevins, CEO, from the Raynaud’s and Scleroderma Association, said: “We are delighted to support this project at NTU, with Dr Anderson and the dedicated research team. Raynaud’s sufferers frequently have issues in keeping their hands warm and having a battery operated, external heat source that is compact, lightweight and user friendly, means we are confident it will bring a great level of comfort and relief to those with daily challenges”.

Thanks to Margaret Edmonson for this information: British Gas has a Priority Vulnerable Register and people with scleroderma can be on this register. It means that they have priority for service in an emergency of lack of power and can have a free annual check of gas appliances. This wouldn't include actual servicing of these appliances but would check if they were safe. Worth looking into if you are with British Gas!

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Raynaud’s & the Extremities Many readers will be very familiar with the classic colour change of the hands and feet from an attack of Raynaud’s phenomenon. However, readers may be less aware that Raynaud’s can also affect the other areas of the extremities like the ears, nose and some of the more intimate areas. Before discussing this, it is first very useful to think about what happens to the circulation and skin during an attack of Raynaud’s and why these areas might be involved. In Raynaud’s phenomenon the circulation clamps down, which causes less blood to reach the extremities, which turns the skin pale or white, often triggered by cold or stressful environments. As the circulation becomes stagnant the skin turns a dusky blue colour (due to lack of oxygen) and then as the circulation returns to the tissues, the skin finally appears red. Patients may experience one, two or all three of the colour changes. The extremities are those areas of the body that are furthest away from the main circulation and are very dependent on a good blood supply. They include not only the hands and feet, but also the ears, nose, tongue, nipples and penis. These tissues are sensitive to any reduction in blood flow and therefore can be affected during an attack of Raynaud’s. Although great strides have been made in understanding the scientific basis of Raynaud’s phenomenon, little is known about how often Raynaud’s affects the ‘other’ sites mentioned above, and whether this differs between people with an underlying condition (like scleroderma or another autoimmune disease) and those without. When we consider how exposed the skin of the face is to the elements, it is not surprising at all that patients often tell us in the clinic that Raynaud’s often affects the nose and ears. Attacks of Raynaud’s affecting the tongue have also been reported in medical literature. There is some literature reporting that Raynaud’s of the nipples may cause problems with breastfeeding. From the small number of medical case reports, patients are often initially mislabeled as having a fungal infection of the nipple. Raynaud’s affecting the nipples has been successfully treated using drugs like nifedipine (which is also used for Raynaud’s). If this is a problem for you then please talk to your midwife or health visitor who will be able to assess both you and your baby, and be best placed to advise you. In men, attacks of Raynaud’s phenomenon involving the penis have been reported. Also we know that men with scleroderma may have problems with erectile dysfunction (i.e. the inability to get an erection otherwise called ‘impotence’). Blood flow is key to both having and sustaining an erection, so we can understand why people with scleroderma (in which we know there is a problem with circulation) might be more prone to problems with erectile dysfunction. It is, however, important to remember that there are a number of effective treatments (e.g. Viagra) that are available for erectile dysfunction and some are also used for Raynaud’s in patients with scleroderma. If you have scleroderma and are worried about problems with erectile dysfunction then please don’t feel embarrassed to discuss it with a medical professional so you can be fully assessed and the possible treatment options discussed with you. Similar to finding ways of avoiding Raynaud’s affecting the hands and feet, try to prevent attacks by keeping warm and avoiding any situations that you have found to trigger attacks for you. The RSA provide a number of helpful information booklets for patients with Raynaud’s phenomenon and scleroderma. Finally, a key point is that if you are concerned in any way about how your Raynaud’s or a related condition (like scleroderma) is affecting you, then it’s always better to discuss this with a healthcare professional and get things ‘checked out’ as earlier diagnosis (and treatment, if needed) is always best. Dr Michael Hughes Arthritis Research UK Clinical Research Fellow The University of Manchester and Salford Royal NHS Foundation Trust

Have you signed up to our Facebook and Twitter pages to hear all that is going on? We share hints, tips, stories, articles, anything that you might like to read! You can follow us here: raynaudsandsclerodermaassociation

@raynaudsuk

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Breastfeeding This is the story of a supporter called Caroline and how she struggled with Raynaud's when breastfeeding her daughter. Both her health visitors and a GP failed to diagnose her with Raynaud’s. Luckily, she eventually got a diagnosis due to her own research and seeing a more experienced GP. She subsequently knew what to look for when she had her second daughter. If you would like to get in touch with Caroline with any questions or support, she would be more than happy to hear from you at hsp65@yahoo.co.uk The adjacent photo is of Caroline and her two daughters, Katie and Alice, meeting for the first time. Thank you for sharing your story Caroline. My first daughter was born in July 2011. It was not a warm summer but towards the end of August there was a noticeable drop in temperature. Living in a poorly-insulated Victorian house meant that we really felt the cold coming in. Still, when I started to have pain while feeding my baby, I didn’t understand what it was.

triphasic colour changes can only add up to Raynaud’s. I knew I’d had it in my hands and feet for years, although I never had it formally diagnosed, but it never occurred to me that it could happen in the nipples. Apparently, the story of recurrent treatment for thrush for months on end is a common one.

I’d had a few little blips with trying to establish breastfeeding but we had settled into it well by this point. I had started to express some milk in the evenings so my husband could do the final feed of the day (and I could get an early night!). One evening, I felt uncomfortable when I took away the breast pump and I noticed that my nipples were dark purple. I dismissed this as engorgement due to the suction of the pumps. Over the next few days, I frequently felt pain shortly after feeding my daughter or expressing. It felt like very intense spasms in the tips of my nipples and when I thought to look at them, I noticed that they were white. Sometimes I also experienced pain as my baby latched on and this was incredibly difficult as I didn’t want to upset her by reacting to it. I remember telling my husband about the colour changes, but it didn’t occur to me what they meant. All I knew through the general new-parent fog was that it hurt badly enough that sometimes I couldn’t help shouting with pain.

Since then, I have spoken to many women who have experienced pain due to breastfeeding, several of whom gave up breastfeeding rather than enduring months of pain. I have made a point of mentioning Raynaud’s at any opportunity, since it is common but easily missed. We moved house when our first daughter was 4 months old and so for my second pregnancy this year, we saw different midwives and we have changed our GP surgery. Whenever I was asked about my past medical and obstetric history, I mentioned that I have Raynaud’s and that it complicated breastfeeding my first baby. Almost every time I mentioned it, they said that they didn’t know that this could happen, so I have made a point of spreading awareness, especially when there were students present.

Wind back the clock a few years to 2005-6 and I was still a doctor, working as a Senior House Officer in Clinical Immunology. Part of my job involved working in a multi—disciplinary medical clinic, seeing rheumatology patients. I saw patients with a wide variety of autoimmune diseases, which most doctors only ever see in textbooks. I learnt an enormous amount, both from the senior doctors and from the patients, but I never discussed breastfeeding with any of my patients. I certainly never thought to ask them about whether those who had Raynaud’s had experienced any problems with breastfeeding and no one ever mentioned it to me. It’s not something we learnt about at medical school. Back in 2011, I went to see the health visitors. They thought it could be thrush so advised me to see the GP for some anti-fungal treatment. I saw a rather inexperienced GP who told me that pain on breastfeeding was either mastitis or thrush and it wasn’t mastitis so it had to be thrush! Anti-fungal treatment didn’t help so I returned to the health visitors and then the GP. I insisted on seeing a more experienced GP, which was a very fortunate decision. He said he had only come across this once before and this patient had been treated repeatedly for thrush for several months before losing patience and searching the internet for answers. She self-diagnosed Raynaud’s and within a few days of starting treatment (14 days of a heart drug called nifeidipine) she was pain-free. The GP said that he would prescribe me some nifedipine if, after looking into it myself, I thought this was a reasonable diagnosis. I found nothing useful on Google Scholar, but discovered a great website called ‘Kellymom’ which had some really good articles on nipple blanching. Finally it all fell into place: coldinduced spasmodic pain of an exposed extremity associated with

Last summer was much warmer than the one we had in 2011 and my second daughter was born in early June. I kept waiting for autumn to arrive properly, but we have had an exceptionally warm year and I have been very careful to wrap up properly in the cold, so I didn’t start to experience symptoms until November. While the nifedipine did the trick the first time I tried it, since then I have experienced some side effects which meant that I didn’t complete the full fortnight of treatment. When I first started to notice the pain and colour changes in my nipples, I requested some nifedipine from the GP, which resulted in a long conversation about Raynaud’s as he had no idea that it could affect breastfeeding. He thanked me for educating him at the end of the consultation, but I have to admit that I am growing a little tired of educating people one at a time. I believe that many women must have undiagnosed Raynaud’s of the nipple, which is either mistreated as recurrent thrush or causing them to give up breastfeeding. Raynaud’s is common, especially in women, so it is strange that so few people involved in caring for newborn babies and their mothers seem to have come across it. I first discovered the Raynaud’s & Scleroderma Association because I was looking for advice online, but even their website did not have anything about breastfeeding – a situation which I hope to remedy! It is important that women with Raynaud’s know it could affect breastfeeding, but I would like to raise awareness among GPs and health visitors too, so that when women seek help with pain due to breastfeeding, this should be something which is considered. It never occurred to me that I would one day be discussing my nipples in public, much less talking about their colour-changing tendencies, but if doing this will raise awareness of a very painful but easily-fixed problem, then I will put my modesty aside and tell everyone I can about my patriotic red-white-and-blue nipples!

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Doc Spot Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

If you have a question you would like Professor Chris Denton to answer, send it to Head Office or email info@raynauds.org.uk with Doc Spot in the subject heading. Thanks!

Q: Are there any recommendations on the use of antibiotics or other medications before, during and after dental treatment for patients with scleroderma? I appreciate that this will depend on what specifics already exist including the medication one is already taking, what the state of oral health is prior to assessment by a dentist…and what dental treatment is required but wondered if there is a general answer? A: Scleroderma affects the mouth, teeth and gums in a number of ways including reduction in the quality and amount of saliva (sicca symptoms) associated with inflammation or fibrosis of the salivary glands. In addition there is a thinning of the tissues around the teeth and gums that can lead to loosening of teeth and changes in the mouth and lips. Finally, some treatments for scleroderma such as drugs that suppress the immune system may reduce resistance to infection. These effects may lead to dental advice to take antibiotics to treat or prevent dental infection. In general, treatment should be along the same lines as for patients that do not have scleroderma. There are no specific antibiotics that are recommended or contra-indicated in scleroderma so you can be advised by your dentist. Q: Do you have any information on the balance of the positive effects of niacin for Raynauds Phenomenon and the negative effects of niacin on the development of diabetes? A: Niacin, also called vitamin B3 or nicotinic acid, is an essential dietary component that is involved in normal skin, bowel and brain function. As a supplement, it has been reported to help Raynaud’s and is one of a number of vitamins or supplements. In studies high doses have been used and these could have medical side effects although few have been reported. As you suggest, there is potential to worsen or even trigger type 2 diabetes (occurring in middle age, typically non-insulin dependent diabetes associated being overweight). Therefore it would be sensible to have your blood sugar and urine tested for any diabetic tendency if you are planning to take high dose niacin for a prolonged period. I usually recommend that any supplement is taken for 4-6 weeks in the first instance to see if it helps Raynaud’s and only continued if it is definitely beneficial. Q: Are Ganglions and Raynaud’s connected? A: Ganglions are soft gelatinous cysts related to joints that probably result from joint fluid accumulating in the tissues around tendons. There is no association with Raynaud’s phenomenon. Sometimes they are removed by surgery but often they improve or disappear over time without specific treatment. They are rarely painful but can be unsightly. Q: I was just wondering if you have many people talk to you about Raynaud’s of the nipples? All of the literature online seems to be on women that breast feed. I am 37 and not breastfeeding. I did however feel this pain throughout both of my pregnancies. It is excruciating and affects the left more than the right. The only thing that stops the throb is heat. My GP prescribed nifedipine but it made me feel like my blood pressure was increasing. Do you have any suggestions how to manage Raynaud’s in the nipples, other than walking around with a hot water bottle in my bra? A: Raynaud’s can affect any part of the body that has a temperature sensitive circulation and whilst the most frequently affected sites are the hands, ears, knees and feet, it can also affect the nipples, tongue and occasionally the penis. When the nipples are affected this can give all the symptoms that you describe. Some patients have found that GTN ointment can help when applied to the nipples but this can also cause headaches as it can be absorbed into the blood. The same measures that are used to tackle other sites of Raynaud’s attacks may help – concentrating on maintaining a warm central temperature and avoiding stress where possible. Vitamins or other supplements are worth considering as they often cause fewer side effects than prescription medications and approaches such as evening primrose oil, vitamin supplements or fish oil capsules might be worth trying. Q: Nitrates help to open blood vessels. Do you know, therefore, if taking Nitrate supplements could help Raynaud’s? A: Nitric oxide is a chemical best known as a gas, but in soluble form an important natural vasodilator that opens up blood vessels and is naturally produced in the body from a chemical called arginine. Nitrates used medically provide a potent source of nitric oxide that avoid the need for synthesis and so this can help medical conditions such as angina and sometimes is used for Raynaud’s. The main problems limiting use are headaches or low blood pressure due to general dilation of blood vessels and low blood pressure. High doses of arginine in the diet have been found to have the same effect but amounts needed to be eaten are generally not feasible or palatable. Nitrates are commonly present in food and can be used as preservatives but these are not usually in a vessels form that can be made into nitric oxide, they are more likely to be product of nitric oxide breakdown in the body.

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Remembering Anne Anne Mawdsley MBE, the founder of The Raynaud’s & Scleroderma Association, sadly passed away in October 2014. Messages and kind words arrived from the UK and across the world, showing how much she touched the lives of others. She was committed and passionate in the creation of a charity dedicated to those with Raynaud’s and scleroderma. See the timeline below of Anne’s tireless efforts to develop the Raynaud’s & Scleroderma Association and its work .

31st May

1942

Anne Rigby was born in Wrexham, North Wales.

1963-87

Anne qualified as a teacher of Physical Education from I.M. Marsh College of Physical Education. Anne went on to teach at schools in Chester, Wrexham and lectured at Chester College. She then became the swimming teacher at Alsager School.

1970-73

Anne married Harry Mawsdsley and had two boys, Craig and Andrew, in 1972 and 1973 respectively.

1975 1982

Anne was diagnosed with Raynaud’s, following an operation.

Anne founded the Raynaud’s Association as she struggled to find any help after her diagnosis. She established the Raynaud’s Association to share information, fund research and bring fellow sufferers together. She ran this part-time alongside her teaching job. The first newsletter was produced this year and the Duke of Westminster became a patron.

1983

The Raynaud’s Association became an official charity and the charity began taking members. The first Raynaud’s Association annual conference was held in London and attended by over 200 people from across the UK. The first sponsored swim was held for the charity.

1984

Anne was diagnosed with scleroderma.

1987

The charity had raised enough funds to purchase an office in Alsager. Anne took on the full time role of CEO.

1989

The Alsager office was extended due to funds raised.

1990

The name of the charity was changed to The Raynaud’s & Scleroderma Association.

1991

The newsletter was renamed “Hot News”.

1993

Anne was awarded an MBE for services to charity.

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Remembering Anne 1994

Anne published a book for GPs. Anne was now recognised as a patient leader and was invited to present a paper at an International Conference in Sydney, Australia. Sooty visited the office!

1996

Anne published a book entitled “Living with Raynaud’s”.

1997

Anne published another book called “Living with Scleroderma”. She was invited to give a presentation to the Parliamentary Group on Skin at the House of Commons.

1998

Anne published “Raynaud’s - Your Questions Answered”.

1999

Anne was frequently speaking on television and radio about Raynaud’s and scleroderma in order to increase awareness.

2000

The RSA funded fourteen specialist nurses at centres nationwide. A fundraising swim, which Sharron Davies and David Wilkie entered, raised over £10,000. The charity launched a mascot, Percy the penguin.

2002

To celebrate 20 years of the charity, a tree was planted at the Royal Botanic Gardens in Kew and Anne took part in a fundraising car rally test stage. A congratulatory anniversary message was received from Prime Minister Tony Blair. A book called “A Journey of Discovery” was published.

2003

The RSA adopts the first albino penguin born in captivity in the UK and names it “snowdrop”.

2004

Anne swam with sharks to fundraise for the RSA. Sharron Davies and Nick Ross both become patrons.

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Remembering Anne 2006

Anne does a new fundraising challenge, the Olympic Bobsleigh Run in St Moritz.

2007

The charity launches a new logo and new book “Scleroderma - The Inside Story”.

2008

Anne, Nick Ross and David Wilkie do a fundraising indoor skydive.

2009

Raynaud’s and the RSA products are featured on BBC Breakfast.

2010

Anne and Jo Kaddish, then Chair of trustees, drove a team of Huskies across Finland in minus 32 degrees. The Cool Million was launched to mark the RSA’s 30th Anniversary in 2012.

2012

2013

A House of Commons reception was held for the 30th Anniversary and a message of congratulations was received from the Prime Minister, David Cameron. Anne takes part in a pedalo challenge on Lake Windemere with Eastenders actor Don Gilet. Anne stepped down as CEO of the RSA.

Anne retires from the RSA.

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Remembering Anne A Service of Celebration for the life of Anne Mawdsley MBE was held at St Mary’s Church, Alsager, on 21st November 2014. It was a lovely service and included tributes from friends and family and singing from Anne’s choir, the Alsager ‘Can’t Sing Choir.’ We have included excerpts from Professor Dame Carol Black’s tribute and her son’s, Craig Mawdsley, full tribute. If you would like a copy of the booklet produced for the Celebration Service, please send us an A4 SAE with a large letter stamp on it (74p second class, 95p first class). Excerpts from Professor Dame Carol Black’s tribute: “Anne was a force that made things happen, and I very much hope that that force – of determination, willpower, vision, courage and patientcentred work – will live on in those who work in the area of scleroderma and Raynaud’s. This is above all what Anne would have wanted. “Anne did something else, and Professors Denton, Abraham and myself have often discussed this. Let me explain: Anne acquired a deep understanding of what would eventually lead to progress and what would, in the end, help patients. “She knew that progress depended upon clear vision, and that the ultimate goal might be remote from the immediate task – but that things had to be leading in the right direction. This was very important in her approach to research, as she understood that quite fundamental biological and genetics projects were likely to be the key to understanding the disease. She quizzed us researchers intensely; she sought opinion from overseas; she understood the value of supporting both the short-term project as a data-collecting exercise for larger things, and also the longerterm research which was gradually building a body of evidence. Like the rest of us she got frustrated: she would often ask me why we could not get to grips with calcinosis, and gut disease, particularly incontinence. She was quite rightly a woman in a hurry. “She, above all people that I have known, placed for patients, Raynaud’s and scleroderma in the public domain. “Professor David Abraham cannot be with us today, but he wrote to me: “ I want to pay tribute to Anne myself. She was an exceptional and gifted human being. In good times and in bad, she never lost her capacity to smile and laugh, nor to inspire others. I admired and respected her for her energy and commitment, and especially for her devotion to patients and the Raynaud’s and Scleroderma Association. Her determination and vigour provide a role model for us all, and it is these exceptional qualities that have left a lasting impression on so many who knew her. “Anne is no longer here in person, and no longer in the grip of complex disease – but she is most certainly not forgotten”

Craig Mawdsley’s tribute: “Mum hasn’t made it to heaven just yet. She’s still negotiating with St Peter. He had been expecting her a few years earlier, but each time she cancelled at the last minute and she’s trying to get a refund. She’s talking him into giving her a bigger room and getting breakfast included. And maybe throw in a donation too . . . He’s not sure whether to be annoyed or impressed. But he knows she’s been doing this all her life and he’s met his match. Today we’re celebrating Mum’s life: a life where not a moment has been wasted. A woman in a hurry, as Dame Carol Black said. A life that was lived by pushing forward to the future, not dwelling on the past. A life that always asked “What Next?” rather than “Why Me?” We have spent this morning hearing about extraordinary character and remarkable achievements. About money raised and obstacles overcome. Millions of pounds raised from nothing. Thousands of people helped. Pain relieved and medical and scientific breakthroughs funded. As a direct result of the actions of one person. So it’s easy to feel that mum was a one-off, a remarkable character who did things the rest of us couldn’t imagine achieving. She was someone to be admired and written about. A woman who hundreds gather to remember and celebrate. None of us can imagine this happening for us when the time comes. She was quite unique. But that was never her attitude and it’s not what she wanted her legacy to be. Because the most inspiring thing about mum was that she just felt she was doing what any normal person in her position would do. If no-one knows about your condition well, you find out about your condition. If no charity exists to support sufferers and fund proper research then you set one up. If doctors are giving people the wrong advice then you change them. If you need publicity, you ask a celebrity. If you find ignorance, indifference and hopelessness, you offer knowledge, care and hope. If people are trying to pretend they know more than you then you become a globally recognised expert in the condition and know more than most medical professionals. Well, maybe that last one is a little above and beyond the call of duty, but you get the gist . . . What mum wanted all of us to do was to stand up for ourselves and take control of our lives. To stand up for others as they can’t do it themselves. To get things done. She didn’t think she was doing anything special, she thought it was common sense, she thought it was the very least she could do. The very least anyone would do. She thought that any of us, any of you, would do exactly the same in her position. She believed in you. All of us hit setbacks. All of us have low moments. All of us fail. And when that happens, just think of mum, and the simple way she had to fix things that weren’t working, one at a time. Nothing grand, nothing spectacular, no ego, no grandstanding, very little drama. Her life wasn’t a Hollywood movie, it was a job of work, where putting in the hours always delivered results in the end. If you think of her as special and different and unique, you give yourself the excuse that she never gave herself. We will remember her by getting off our backsides and changing the world in small ways. Not waiting for someone else to fix it for us, or hoping that the government, the authorities or the establishment will take care of it. Not by moaning or complaining, or wishing that our lives were different. We will remember her every time we take our fate in our own hands. Every time we reach out to help someone else. Every time we question why things are the way they are and decide to change them for the better. Every time we look ahead with hope, instead of looking back in anger. If she were here today, she wouldn’t be celebrating herself, she would be celebrating you. Because she was just a normal person, like every one of us. And that, that is what made her so extraordinary.”

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Conquering the Inca Trail! Kimberly, a Canadian Raynaud’s sufferer, trekked the Inca Trail last year. Her story is an inspirational one, and just goes to show how planning ahead is crucial to managing Raynaud’s. Her story can be read here... Thanks for letting us share it Kimberly! The classic Inca Trail trek to Machu Picchu spans 45 kilometres over 4 days reaching altitudes of 4200m. As you walk along the Inca roads and climb the ancient Inca stairs up and over Dead Women’s pass, you are stepping into history as your view changes from spectacular mountain backdrop to ancient ruins, a highlight for many people’s trip. There is more, the average tourist now has the opportunity to overcome physical hardships in a small expedition, pushing themselves and the people around them up and through this tricky hike, but what happens when you are staying in the mountains and dealing with Raynaud’s disease? What I packed: • Smart wool socks, lots of them, to switch everyday or if they get wet. • Merino wool base layer tights and base layer shirt (I used these to sleep in at night in the tent). • Athletic tights (2 pairs to which occasionally I layered.) • Gortex pants, expensive but any frostie knows getting wet makes things so much worse, and it rained during my hike. • Fleece hoodie, these never look cute but are helpful. • Gortex jacket. • Merino wool glove liners, I was able to wear these at camp when the weather was less cool as well as put them in my gloves when it became too cold. • Mittens (glove liners fit in these as well). • Three buffs, as most body heat escapes through the head. With these I could have a hat, scarf and balaclava; a veritable Raynaud’s trichotomy. • Gortex shoes (keep dry and thus warm). • A mummy bag with extra down at the feet rated for -10°C • Sleeping bag liner and Thermal insert (camping at 3,800m can be chilly). • Baffin Boot base camp slippers, these are like sleeping bags for your feet and make a huge difference. How did my Raynaud’s affect my trek? I was aware that four days on the Inca trail would include intense temperature variations as well as the possibility of a little bit of stress, which can trigger Raynaud’s, so I did my best to be as well prepared as possible. The first day was easy - the sun was shining, the altitude was not bad, the incline was not too steep, and as an added bonus we had no rain! I was able to hike in a t-shirt during the day but I was glad to have a thick sleeping bag during the night! Not only was day two the longest day of trekking, it was also a day of high altitude on the Inca trail, so I carefully packed my day bag. I included a pair of extra socks just in case my feet got wet, a merino base layer, Gortex pants and jacket, extra mittens and three buffs (an item which can be a hat, scarf or balaclava). As we headed up the mountain in the morning, I felt relatively fine as long as I kept a steady pace. After sitting down for an hour eating lunch, however, I could feel the cold in my hands and so I quickly added my merino glove liners to my mittens and an extra base layer under my fleece and a scarf. Some members of our group had apparently contracted a virus which caused a slowdown in our day. Subsequently, my feet felt numb and uncomfortable. I decided to leave the group and hike up at a steadier pace in the hope of generating more heat thus increasing my internal temperature. As I climbed higher up the mountain, the temperature was dropping steadily. It was also windy and

rainy so I stopped to add another layer on my legs - Gortex pants which were a huge help as they block the wind. When I reached Dead Women’s pass at 4,200m, I decided to wait for the rest of the group. This was probably not the best idea for my Raynaud’s, but I knew they were struggling and I wanted to be there to cheer them on as some hit their first ever summit. I wedged myself between two rocks for some shelter and waited for about an hour. Thankfully, the last of the group arrived just before I was ready to continue my trek down. By this point, my hands and feet had turned blue. I was feeling tired and started to get more stressed about my current condition, inevitably making things worse. Instead of staying with everyone for the trip down, I ran ahead, desperate for the hot water that I knew was waiting at my tent. The last 400 meters of descent were definitely a little tough for me as I was lacking feeling in my feet, which caused me to wobble down like a penguin! When I reached the tent I kicked off my wet clothes, slipped on my base camp boots and climbed into my sleeping bag complete with a thermal liner to warm up. I was uncomfortable for the rest of the night. It was still cold the next morning so I decided to head up the mountain before the rest of the group. Despite having warm boots on, my feet were constantly numb. I was feeling ill and getting really concerned about my Raynaud’s but I was told to wait at a set of ruins for the rest of the group. When I got there I noticed two people just behind me on the mountain, my Mum and Dad! We sat on a rock and I took my shoes off so my parents could rub them and try to get some heat in them. I am not sure this helped with my Raynaud’s, but it did ease my mind, which was a huge help. As soon as I was told I could move forward I rushed up the mountain once again, my parents and their warm hands met me at every stop. This continued until lunch time when the temperature finally rose and my body was able to regulate itself. The Raynaud’s issues in my hands continued for the rest of the journey, but not any more seriously than it would do if I was sitting and typing on a computer. I arrived in camp feeling high in spirits. I put on some slippers then crawled into my sleeping bag and had a pretty comfortable night. The last day of the hike was short, and with it being our lowest altitude, it was probably a little bit warmer than the other days. My hands and feet felt fine and were nearly back to their normal colour. It rained for most of the day but covered in Gortex and knowing there was the heated bathrooms of Machu Picchu right in front of us, my mind was eased. With my Raynaud’s under control and in one of the wonders of the world I could fully enjoy my day. My Star Player I think that anyone interested in expeditions, mountains and overnight hikes should look into Baffin Boots. These are down filled slippers to wear in and around camp and they are soft enough to shove into your sleeping bag for the night. These really helped me when I was having trouble with my feet, especially as I couldn’t have a hot shower, which is what I do at home to warm up my feet. The Baffin Boots made my nights much easier.

Content has been modified slightly for editorial purposes. The original blog can be read here http://walkaboot.ca/peru/conquering-the-inca-trail-with-raynauds-disease/

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Fundraisers Thank you to all of our wonderful fundraisers, we truly appreciate each and every one of you!

Debbie Pentland held a Santa Tai Chi lesson on the beach and raised a wonderful £72.50 Greg and Rebecca Amos ran the Bacchus Half Marathon in Surrey, which starts and finishes in Denbies Vineyard. They raised a brilliant £740!

Alison Leaper and Babs ran the X Runner Wildwarrior

Thanks also to the following: Mr & Mrs Howard who asked for donations to the RSA at their 25th Wedding Anniversary celebration Fermin Illana ran the Richmond running festival half marathon Neill Adams walked the Gritstone trail Tania Craddock who competed in the Born Survivor at Capesthorne Hall Mr & Mrs McCune who celebrated their Golden Wedding lunch and kindly asked for donations to the RSA Wendy Liddle for holding an open garden Mr Wood who took part in a table top sale Woolwich Polytechnic Lodge for hosting a Blues Brothers Night David Roskilly’s brother who arranged a Christmas jumper day at work Innospec who held a Book Event

Jo Staples ran the Great South Run in memory of Kat Thomas and raised a tremendous £625

Meet Emete! She is running the London Marathon on 26th April on our behalf! I am 38 years old, married with 2 children aged 10 and 6 years old. I work full time as a Childcare tutor/assessor/IV for a charity based Training provider. I live in Swanley, Kent, which is a beautiful place to run through the fields, especially in Eynsford and Farningham. I have always enjoyed running and keeping fit. Raynaud’s has had an impact on keeping fit especially in gyms with the air conditioning on - training in a jumper, gloves and thermal leggings looks out of place! I have tried swimming, but the temperature of the pool is always too cold and by the time I have swam a couple of lengths, my hands and feet freeze and I find it difficult to dress after. But I will not let Raynaud’s get the better of me! This is why I want to run the marathon, to raise awareness of this condition and ensure the funds I raise go towards funding research into treatments and hopefully one day finding a cure. Good luck Emete! You can support her here https://www.justgiving.com/Emete-Bilal/

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Fundraisers RSA receives a £2,000 cheque from TK Maxx! Alex Spark was diagnosed with generalised atrophic morphea scleroderma at the young age of 13 after suffering with hard patches on her arms. After studying Animation and Illustration, she is now training to be an arts teacher. She works part time at her local TK Maxx Store in Leigh and was delighted to be nominated for the TK Maxx Community fund, which supports local causes and helps charities, people and families in their area. Alex commented: “I was thrilled to receive this fund which I am donating to the RSA to help towards further research into this condition and hopefully, one day, a cure.” Alex and TK Maxx Team Leader, Kieran Ford, who applied for the community fund, presented Tracey Spray, from the RSA, with a cheque for £2,000. Kieran explained why he had nominated Alex to receive the support: “I had never heard of the illness and had no idea of the symptoms or effects - this led me to think that if I hadn't heard of it, and nobody I know has ever mentioned it, how much support and awareness does this illness currently hold? I told myself the answer can't be a great deal.“ Kieran also talked about working with Alex: “Without knowing her, you wouldn't know she has an illness. Alex has a great personality and seems to use it as motivation to succeed in whatever she wants to accomplish. The effort she selflessly puts in to raise funds herself is nothing short of admirable.” Tirelessly indeed, Alex has already raised over £750 hosting a craft fayre in September and plans further fundraising. Huge thanks go to the inspirational Alex, and also Kieran and TK Maxx for the support. Picture of Cheque Presentation in Leigh Store, left to right: Tracey Spray – Raynaud’s & Scleroderma Association, Alex Sparks – Fundrasier & TK Maxx Employee, Kieran Ford – TK Maxx Team Leader

We were delighted to have three spaces in London’s biggest santa run in Victoria Park last December. They were filled by Alexandra, her husband Dean and her friend Marion. They raised over £500, which is a tremendous amount, and truly smashed their £100 target! Alexandra has both Raynaud's & scleroderma. Scleroderma has affected the skin on her face, arms, chest and neck and has developed ulcers on her fingertips. She sometimes has trouble swallowing and more recently scleroderma has affected the tendons in her legs, which makes running impossible. She used to run miles, and was a medic with the TA, but now walking more than 800 yards can be painful. Alexandra’s decision to take part in the Santa Run was clearly an incredibly brave one, and we are incredibly grateful to her for doing so!

We are excited to have spaces in various fundraising events in 2015! If you would like to walk, run, cycle or swim on our behalf, please do not hesitate to get in touch! You won’t have to pay for the place, you just need to collect some sponsorship for us, and possibly do a bit of training! If you can’t do this, do you have any friends or family who might be up for the challenge? The events we have places in are: Great Manchester Swim (1 mile) Saturday 4th July Great London Swim (1/2 mile or 1 mile) Saturday 18th July London to Brighton bike ride (54 miles) Sunday 6th September We are also filling spaces in various other events such as walking the three peaks, skydives and London to Paris bike ride. If you would like more information, please email lucy@raynauds.org.uk. Thanks for your support!

If you feel inspired by these wonderful fundraisers, and would like to fundraise on our behalf, please get in touch! We can support you throughout your fundraising endeavour and every penny raised truly counts to us 15

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FESCA The Federation of European Scleroderma Associations by Ann Tyrrell Kennedy, President The Federation of European Scleroderma Associations (FESCA aisbl.) has been unifying the goals of patient support and advocacy groups for 8 years now. An umbrella group of 24 patient organisations in 19 countries, it shares awareness-raising campaigns, information, and practical strategies, not only within Europe but in the Americas, Australia, and elsewhere. As an initial group of 7 associations, its first task was to create a World Scleroderma Day, then a World Scleroderma Congress. Currently, a major task is to partner research projects with the World Scleroderma Foundation (WSF). Scleroderma is a rare disease, and effective research requires a wider consortium of patients than can be found in one country. It is our role to provide access to a sufficiently large base for clinical research and to spread information among patients concerning new therapies. Scleroderma, though chronic, progressive, and incurable, often goes undiagnosed for years. We work to accelerate early diagnosis and equitable treatment, and to improve understanding of the medical and psychosocial aspects of the disease. The campaign is held in every country on June 29, World Scleroderma Day. It has worked wonders in raising the profile of this obscure disease, which is often linked to other rheumatic diseases like rheumatoid arthritis and lupus. In 2014, the campaign theme was “Turning Towards the Sun,” using FESCA’s iconic sunflower, the worldwide symbol of the battle against scleroderma, along with a painting by Paul Klee of flowers optimistically facing a sunny window. Alexander Klee, grandson of Paul Klee, who died of scleroderma in 1940, is the patron of FESCA and WSF, and has been very supportive of our goals, chief among which is that no-one else ever lose this fight. For more information about scleroderma, please visit www.fesca-scleroderma.eu Originally printed in EULAR’s e-breakthrough newsletter, Issue 8, January 2015. Reprinted with permission.

New member support contacts! We are delighted to have two new member support contacts, Marie Gray in Glasgow and Diane Unsworth in Newton-le-Willows, who are introduced below. Please do not hesitate to get in touch with them, they are lovely and welcoming ladies. Diane was diagnosed with Diffuse Systemic Scleroderma in 2012. She has GI, pulmonary and renal involvement, and also secondary Raynaud’s, hypertension and angina. RSA: What’s your favourite place to visit locally? Diane: My friends!!!!!! They always have the kettle on and they are better cooks than me! RSA: What motto do you live by? Diane: Things happen for a reason! RSA: What is your favourite book? Diane: The Power, by Rhonda Byrne. It was given to me when I was in hospital and it got me through some rough times when first diagnosed and it still does!

Marie has Raynaud’s & Limited Cutaneous Systemic Sclerosis, plus a host of overlaps including Sjogrens, Hypothyroidism & GI issues. She has had Raynauds since primary school age & the others have developed more recently. RSA: What is your favourite color? Marie: Warm red RSA: If you could have a super power, what would it be? Marie: A super power that would let me spin a silk cocoon around me when I’m cold! RSA: What motto do you live by? Marie: Never worry, it’s like a rocking horse, it keeps going & gets you nowhere! RSA: Who would play you in the movie of your life? Marie: Keira Knightly could play the young, stroppy me & Judy Dench could play me now, we look similar & she has a similar positive outlook on life

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Contacts NURSE ADVICE LINES Royal Free, London

Sally Reddecliffe & Adele Gallimore (For Pulmonary Hypertension Enquiries)

020 7472 6354

Royal Free, London

Specialist Nurses

020 7830 2326

Bath

Sue Brown

01225 428 823

Manchester

Specialist Nurse Team

0161 206 0192

Leeds

Specialist Nurse Team

0113 3923 035

Liverpool

Jan Lamb

0151 529 3034

Newcastle Upon Tyne

Karen Walker

0191 223 1503

Belfast

Audrey Hamilton

02890 561 310

Portsmouth

Paula White & Julie Ingall

02392 286 935

Sheffield

Jayne McDermott

0114 2713 086

Brompton

Lucy Pigram

0207 352 8121 Ext no 7112

Dundee

Steve McSwiggan (Available Mon, Tues & Weds am)

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.

MEMBER SUPPORT CONTACTS Bedfordshire Burton on Trent Bristol & Bath S. Cumbria/N. Lancs East Anglia Eastleigh Fife Glasgow

Rita Boulton Helen Nutland Margaret Goff Ruth Randall Jacky March Kathy Allen Rose Bevan Marie Gray

01767 312 544 01283 566 333 ext 5247 01454 310 225 (members only please) 01524 903 493 peteruth@talktalk.net 01394 286 637 02380 610 678 01382 552 272 07947 473 316

Lancashire/North Cheshire Lincolnshire London London, NW Manchester Merseyside North East North Yorks N. Ireland Portsmouth & S Hampshire Southport Surrey West Yorkshire Worcestershire

Diane Unsworth Elenid Matthews Ruta Rackaityte Marilyn York Gill Holden Helen Lingwood Jessie Pickering Tony Overend Patience Bradley Alison Wright Nikki Whitehill Fay Collings Lynne Lister Shirley Lynch

01925 222 363 d.unsworth121@btinternet.com 07854 219 961 07702 245 068 rcktyt@yahoo.com 01923 286 780 01942 877 259 0151 280 1194 jonandhel@sky.com 01388 527 840 01423 862 551 02890 592 370 patiencebradley@gmail.com 02392 367 960 01704 550 580 nicola.whitehill@hotmail.co.uk 01737 762 005 07720 208 597 01386 553 392 slynch@uwclub.net

Please always use the current version of Hot News for the correct contact information. If you would like to be a local contact, please get in touch with us! 17

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Did you know? Males with scleroderma have been found to be more affected by Pulmonary Hypertension In a study entitled “A gender gap in primary and secondary heart dysfunctions in systemic sclerosis: a EUSTAR prospective study” published in the November issue of Annals of the Rheumatic Diseases journal, the authors sought to understand the effects of gender on the systemic sclerosis phenotype and prognosis. Specifically, they found males to be independent predictors of Systemic sclerosis associated life-threatening conditions, such as Pulmonary Hypertension and Heart Dysfunction. Autoimmune diseases are often associated with sex gender bias. Systemic sclerosis (SSc) is an autoimmune disease of the connective tissue. SSc patients exhibit a thickening of the skin as a result of accumulation of collagen that mainly affects the skin, but can progress to the kidneys, heart, lungs and the gastrointestinal tract. In this case, the disease is termed as diffuse cutaneous scleroderma. A portion of SSc patients frequently develop pulmonary arterial hypertension as well. In fact, SSc prognosis is associated to the disease’s progression to other organs, such as the lungs. In this study, the authors analyzed the impact of gender on SSc using the largest European report on SSc patients, the EULAR scleroderma trials and research (EUSTAR) registry. The study included 9,182 patients with SSc, from which 1,321 patients were male. All of the enrolled patients fulfilled the criteria for SSc from the 2013 American College of Rheumatology/European League Against Rheumatism (ACR/EULAR). The authors discovered that in agreement with previous literature, women have a higher incidence for SSc when compared to males. Specifically, they found a sex ratio of six affected women for one man. The incidence however, is independent of age. However, while more women may have SSc, the disease is strikingly more severe in men, with a higher incidence of the diffuse cutaneous forms. The authors identified that the male gender is independently associated with pulmonary hypertension (PH), but additionally is also predictive of PH during follow-up studies. While idiopathic pulmonary arterial hypertension occurs more often in women, in the presence of SS, the link between SSc and PH is more prevalent in men. During follow-up studies, the male gender was also found to be an independent predictor of new episodes of heart dysfunction. Thanks to Pulmonary Hypertension News who let us reprint this article. The original can be found here: http://pulmonaryhypertensionnews.com/2014/11/03/males-with-scleroderma-found-to-be-more-affected-by-pulmonaryhypertension/

And in other news . . . Researchers have discovered a new antibiotic with properties that appear to prevent the development of resistance. More can be read here: http://www.pharmaceutical-journal.com/news-and-analysis/news/researchers-unearth-novel-antibiotic-without-detectableresistance/20067533.article Scientists at the University of Bristol have discovered how to “switch off” autoimmune diseases. It is believed to be an important breakthrough in the fight against debilitating autoimmune disease as it has revealed how to stop cells attacking healthy body tissue. More information of the findings can be read here: http://www.bris.ac.uk/news/2014/september/autoimmune-disease.html A study in France has shown that the highest costs for those living with scleroderma are the costs of hospitalisations and early retirement. Would you agree? More information can be found here: http://informahealthcare.com/doi/abs/10.3109/03009742.2014.976653 A town in New Zealand has a much higher-than-normal proportion of its population suffering with scleroderma. Gravel pits nearby emit silicon, could that be the reason why? The full story can be read here http://www.odt.co.nz/tags/summertimes/329026/disease-more-prevalent-southland A European study has found joint and tendon involvement early in the course of systemic sclerosis can help predict disease progression. More information can be found here: http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/48032

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Did you know? My experience as a patient representative on the Clinical Reference Group (CRG) for specialised rheumatology, NHS England By Nikki Whitehill In July 2014, I attended my first meeting as a patient representative on the CRG for specialised rheumatology, NHS England. Luckily for me, my first meeting in my ‘new’ role was in an afternoon during the summer months, so I was able (with huge effort and determination on my part) to attend the meeting in person, in central London. Clinical reference groups (CRGs) are focused on developing nationally consistent service specifications, policies and service improvement schemes, to then go on and be implemented by NHS England. Their aim is to drive improvements in the quality, equity, experience, efficiency and outcomes of commissioned specialised services and this is reflected by the diverse backgrounds of its members. Their membership includes patients, carers, patient organisations, clinicians, commissioners, public health and pharmacy specialists, and other related health professional organisations such as medical Royal Colleges. There are currently 76 CRGs covering various medical specialities. Systemic Sclerosis (scleroderma) is included in the ‘specialised rheumatology’ group, part of the internal medicine division. I had received via email, prior to the meeting, documentation and paperwork relevant to the afternoon’s discussions. This enabled me to understand the background to the issues being discussed as well as help me to keep up with the flow of the live topics! I have attended the subsequent meetings by way of teleconference. This facility has allowed me to participate whilst being respectful of my Raynaud's symptoms. One of the projects, which I was able to contribute to using my personal experience, was the Management of Digital Ulcers in Systemic Sclerosis Policy. This is currently open for public consultation and can be accessed here: https://www.engage.england.nhs.uk/consultation/specialised-services-policies/user_uploads/bosntn-sildnfl-syst-sclerosis-pol.pdf Compared to the hard work and effort put into this document by the medics, my effort was minimal however, as a patient who has lived with the nightmare of these excruciating ulcers for nearly 18 years, I was extremely honoured to be part of the team who put together this concise step by step document for digital ulcer treatment. I sincerely hope that digital ulcer patients, in future, will have their ulcers managed and treated optimally and quickly, thereby preventing infection risk and, at worse, possible amputation. At all times I have been made to feel extremely welcome and to be a valued contributor of the CRG, by the Chairperson, Dr. Lanyon, the Accountable Commissioner for specialised rheumatology, Ms. Watson, as well as by the other CRG members, including other patient representatives from other autoimmune conditions. As a ‘long term’ patient, it is very encouraging and comforting to see at grass roots level how dedicated the medical professionals are in trying to give the best care and treatment to their patients, given the financial constraints and political landscape that they are subjected to. I feel extremely humbled to be part of such a dedicated group, who have achieved some fantastic results for improving patient care and experience in, not just the Raynaud's and scleroderma field, but for other autoimmune diseases and rheumatic conditions on a national level.

The Project Scleroderma team has spent the last few months preparing for the world wide digital release of their documentary film, "Beneath The Surface". The film was released digitally at the beginning of February and is now available to stream or purchase at www.SclerodermaFilm.com. The synopsis of the film is: Narrated by Bob Saget, “Project Scleroderma: Beneath The Surface” is a film that documents the grass-roots mission of a young woman, Christy McCaffrey, from Philadelphia working to raise awareness for a scarcely known disease that took her mother’s life. In this highly inspirational and hopeful story, viewers follow Christy as she works diligently to create a global movement to rally behind the patients who are suffering from this terrible disease. With the help of social media outlets, Christy connects to scleroderma patients all over the world offering them a voice in this film as a platform to champion for their own cause. The film is an intimate look into the everyday struggles and painful setbacks of scleroderma patients blended with highly educational details about the disease from leading doctors and researchers to illustrate the primary message: “Scleroderma awareness simply cannot wait.”

WAX BATH We have been kindly donated a Remington wax bath. If you would like this, please get in touch by contacting head office on 01270 872 776 or email lucy@raynauds.org.uk

Calling all Health Professionals! Contributions from Health Professionals for future issues of Hot News are always welcome. If you would like to write a piece, please get in touch! Thank you!

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Chief Executive Elizabeth Bevins Founder Anne Mawdsley MBE President Professor Dame Carol Black DBE Vice President Professor Chris Denton Trustees Barry Hicks Joanna Kaddish Professor Jeremy Pearson Professor David Scott

Patrons Sharron Davies MBE Roger Jefcoate CBE DL Nick Ross David Wilkie MBE Medical Advisors Dr. M Anderson Professor J Belch Sister S Brown Professor C Denton Professor A L Herrick Dr. C Lovell Dr. R Macdonald Professor P Maddison Professor R Moots Professor A Silman Professor D Veale

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We would appreciate your feedback on Hot News. What did and didn’t you enjoy in this issue? What would you like to see more of and less of? Please let us know at Head Office by phoning 01270 872 776 or emailing info@raynauds.org.uk. Thank you. Disclaimer The Raynaud’s & Scleroderma Association (RSA) does not endorse or recommend anything (including any products or services) which may be featured, used or referred to in this newsletter. Use of any such products or services or participation in any clinical trials or events are entirely at your own risk. Any views, opinions or statements expressed in this newsletter do not necessarily represent those of the RSA and they cannot be used for advertising purposes. Any information provided is simply for the convenience of readers and the RSA will not be responsible for the content or availability of these products or services. Advertisements for products or services are not endorsed by the RSA and persons diagnosed with Raynaud’s or scleroderma, or suspecting these illnesses, should always consult with their own doctor to ensure proper evaluation and treatment.

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Mawdsley House, 112 Crewe Road, Alsager, Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk Raynaud's & Scleroderma Association © Copyright 2015. All Rights Reserved.