Hot News Vol 2 2015

L AT E S T N E W S • R E S E A R C H • P E R S O N A L S T O R I E S • P R O D U C T S

HOT NEWS ISSUE 130

VOLUME 2 2015

Scleroderma and Raynaud's Unveiled Conference Edgar Stene 2015: Living in the moment Unveiling disease processes in lung fibrosis

Front cover picture: Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard) 34.6 x 21.2cm, Zemtrum , Paul Klee, Bern

MAGAZINE OF CHOICE FOR PEOPLE WITH RAYNAUD'S OR SCLERODERMA AND THEIR SUPPORTERS

Welcome! both the existing charities. SRUK, as a new charity, has the opportunity to learn from, and take forward, the best from each of the existing charities.

So, enough of the big picture for the moment…it’s time to focus on the work that has contributed to, and supported, these changes over the last few months…

Dear supporters of the charity Warm and welcoming wishes to you all in the summer of 2015, from a new look Hot News!

We are now experiencing the glorious summer of 2015, yet many of you will be interpreting the word ‘glorious’ in different ways as it isn’t always about the weather in the UK, is it?

The charity has been, and continues to be, extremely busy in the last few months with organising and running events to help you and yours understand more about Raynaud’s and scleroderma. We rely on our supporters and fundraisers to spread awareness and encourage others to fundraise - particularly in the competitive environment that small charities find themselves in today. Working with others who have a shared mission about Raynaud’s and scleroderma and those who represent similar rare autoimmune connective tissue diseases is increasingly important, and I’m pleased to say that the ‘behind the scenes’ efforts on this continue to bear fruit.

The last two years have been a time of great cultural and organisational change for those at the RSA, to help prepare the charity for further successes and increased influence in the coming decades. For both the RSA and the Scleroderma Society, it is now officially confirmed that we will be joining resources and expertise under one new charity, SRUK, next year.

Due diligence has been completed, SRUK registered and its first member of staff appointed - Chief Executive, Sue Farrington, who has previously worked as Communications Director at the Multiple Sclerosis Society.

Sue was able to join us at the World Scleroderma Day Joint Conference in Manchester on June 20th, where the chair of the RSA trustees, Professor Jeremy Pearson, introduced her to supporters of 2

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The south coast beckoned in spring, prompted by the kind and generous offer of the Mayor of Havant, Marjorie Smallcorn, to nominate the RSA as one of her chosen charities. Giving a talk at the coffee morning and meeting both stake holders and supporters was an honour and a pleasure.

Visiting the Rheumatology team at the Queen Alexandra hospital in Portsmouth for the first time the following day was heartening and I was able to see how dedicated the team are in working with their scleroderma and Raynaud’s patients. The team, including Matron Colin Beevor and connective tissue disease specialist nurses Julie Ingall and Paula White, were all welcoming and Julie and Paula have since had further involvement with us, at the Joint World Scleroderma Day Conference on 20 June, talking about and sharing the Care Plan developed by the hospital, now downloadable from the RSA website.

In May, I felt privileged to receive an invitation to present at a Special Interest Group at the British Society of Rheumatology Conference in Manchester and enlisted the help of patient representative, Nicola Whitehill, to articulate what is it like to live with Systemic Sclerosis. It was a fantastic opportunity to listen to the latest ideas on rheumatic diseases, including scleroderma and connective tissue disease (CTD)-related Raynaud’s. The RSA attended conferences run by related rare autoimmune CTD charities, Vasculitis UK and Lupus NorthWest, and came to appreciate that there are commonalities whilst the diseases have some distinct differences…of particular interest to those in our communities who experience ‘overlap’ conditions! In mid-May I went to the Royal Free Family Day - always fascinating - as is the Patient Day at Salford with Professor Herrick’s team, held in July this year. At the end of May I travelled to Ninewells Hospital, Dundee to meet Professor Jill Belch’s team for the first time, including Doctors Steve McSwiggan, Colin Baines and Faisel Khan. Dundee is another

of the handful of specialist centres conducting research into scleroderma and Raynaud’s and it was most interesting to see the highly specialised imaging machines that measure and monitor vascular blood flow in patients. Ninewells Hospital proposed and held an evening about scleroderma to celebrate World Scleroderma Day. Professors Abraham and Denton at the Royal Free afforded us the opportunity to run an event in Cambridge at the beginning of August with an international flavour - the programme comprised a range of experts from across the world who had gathered for a scleroderma research workshop in Cambridge this year - another tremendous opportunity to host a jointly-branded event between the charities! The Federation of European Scleroderma Associations (FESCA) continues to go from strength to strength under its president, Anne Tyrell-Kennedy and this year facilitated a cross-party topic on scleroderma at the European Parliament, Brussels, at the end of June.

Thank you to all who responded to the call for input into the proposals for a consistent treatment of Digital Ulcers across England.

The RSA made a positive response to NHS England with your help and the policy for the treatment of Digital Ulcers and appropriate use of Sildenafil and Bosentan has been approved by NHS England.

Prizes will be winging their way to winners in different parts of the UK over the summer, thanks to your tremendous efforts at raffleticket selling for the RSA Annual Prize Draw, which raised over £5,000 this year - thank you!

The Online Shop is broadening its products, with new lines including 12% silver gloves (already a ‘sell out’ in Germany according to our suppliers) and more merchandise from Astec, whose insoles have provided relief for many of you. They have just introduced an outdoor glove, tested at the conference this year with extremely positive results.

Taking the relationship with medical schools forward, Nikki Whitehill and I have agreed to talk to medical students at the end of August - starting to extend the reach of scleroderma and Raynaud’s awareness into an audience of the next generation of clinicians.

On the subject of informed and enthusiastic

www.raynauds.org.uk

News supporters, the RSA wants to review how we work with and support local contacts.

Currently our list includes supporters undertaking a range of activities - long may this continue! We want to hear more about how you work in encouraging and supporting others - either as fundraisers and/or giving information to others with Raynaud’s or scleroderma. With this in mind, we will be in touch with local support contacts over the next few months to find out a bit more about what you do and how you keep up to date with developments.

I’ve been heartened to see many of you at events we have instigated or been involved in over the past year . . . and I want to make sure that all of you are making and taking opportunities to keep up to date with what is happening in the connective tissue disease world of scleroderma and/or Raynaud’s.

I’ve talked about relationships re-kindled and strengthened with clinicians and their teams to assure you that maintaining such relationships brings benefits to you as people with scleroderma, Raynaud’s and those who have an interest in your care and well-being. It is important that we are able, and that SRUK will be able, to call on the help and perspective of experts in the field of CTD - to build and strengthen trust and responsiveness on both sides. The RSA advocates on your behalf with clinicians and politicians . . . as well as funding further research and providing robust and credible information and advice. We need your help, support and continued fundraising efforts to ensure that we can better understand these diseases.

The 2015 raffle was extremely special for the RSA as it was held in memory of Anne Mawdsley MBE. Jeremy Pearson, the chair of our trustees, pulled out the raffle winners on Saturday 20th June. We are delighted to announce the following prize winners: Old Trafford Cricket match and one night in Manchester F. Sutherland Portmeirion Water Garden set K. Craze Portmeirion Thomas and Friends set A. Mills-Roberts Portmeirion Peppa Pig set C. Sharp Tour of Liverpool FC stadium R. Brooks Trafford Centre Vouchers D. Unsworth Tour of Emma Bridgewater Factory I. Charlish

In this digital world, the RSA, and subsequently SRUK, will be making more use of new technologies - reaching out to more people in our communities, ensuring we are more effective in all aspects - both in front and behind the scenes.

A meal for two and wine at The Rembrandt Hotel, London C. Apperley Heat holders gift set H. & F. Middleton Asda voucher

So, thank you to everyone who continues to encourage and support us and the work we do - we need your help as much as ever today, and in the future, as SRUK continues the quest to tame the scourge of Raynaud’s and scleroderma.

C. Hodgson Salad bowl J. Colvin Bird Box J. Winchester

Elizabeth Bevins

A huge thank you goes to everyone who supported the cause by buying, selling and advertising tickets - we couldn’t have done it without you!

The raffle raised over £5,000!

Chief Executive Officer

info@raynauds.org.uk

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World Scleroderma Day!

World Scleroderma Day is held annually on 29th June, which marks the passing of Paul Klee in 1940. He was an incredibly gifted artist who suffered from systemic scleroderma. One of his pieces can be seen on this edition’s front cover.

The aim of World Scleroderma Day is to not only spread awareness of scleroderma but honour those who struggle with the disease daily. This year was an exciting World Scleroderma Day as a global website was launched to mark the ocassion and display what was happening globally for the event (www.worldsclerodermaday.org).

The day has been marked across the world, from Canada, to Brazil, to Finland and all the way across to Australia and New Zealand.

Australia invited supporters to “Snuggle up for scleroderma”, New Zealand hosted a scleroderma art event, Cyprus launched a scleroderma campaign and Canada ran a “Hard work, harder disease” campaign.

Worldwide, scleroderma patients, family members, carers and friends were invited to film a 25 second video about how scleroderma has affected them. The time of 25 seconds was chosen as approximately 2.5 million individuals are diagnosed with

scleroderma worldwide. It was a great way of spreading awareness. The videos were shared on the World Scleroderma Day website, if you would like to view them.

Here at the RSA, we were spreading awareness online and the Joint Annual Conference was held as close as possible to the 29th June to mark the day. We asked supporters to “Get your socks on for scleroderma” by fundraising and helping to spread awareness around this theme, thanks to everyone who took part.

Unveiling Scleroderma: Hidden Truth European Parliament Event, Belgium One of the key events to mark World Scleroderma Day this year took place on 30th June at the European Parliament in Brussels. Three topics crucial to the improvement of patient care across Europe were discussed: the importance of early diagnosis, the vital need for investment in research and the crucial issue of equity of care.

The President, Ann Tyrell Kennedy, members of FESCA (Federation of European Scleroderma Associations), a representative from EULAR (European League Against Rheumatism) and eminent clinicians from across Europe, stood shoulder to shoulder with patients and family members to debate the needs of those living with scleroderma. Jointly in the UK and across Europe, patient organisations invited their country’s MEPs to join the debate and the first steps have been taken in raising awareness of those with the potential to influence policy . . .

The opportunity stemmed from MEP James Carver’s personal connection and passion to help. "I'm privileged to be able to support the important issue of scleroderma awareness at this level and sincerely hope that the event will serve as both an introduction and a reminder of the very real issues that scleroderma sufferers face on a daily basis across the EU”. A supporter of the Scleroderma Society for a decade, Jim was able to work with FESCA, via the Society this summer, to bring the issue to a wider audience

With 357,000 people already estimated to be diagnosed within Europe, with the true figure believed to be even higher, it is important to emphasise the need for scleroderma patients to have a consistent quality of care and treatment to help tame this rare and potentially devastating connective tissue disease. Many clinicians already work collaboratively across boundaries as well as in their own countries, in the quest for better management and to unlock the mysteries of the disease.

Professor Denton from the UK, Professor Distler from Switzerland and Professor continued overleaf . . .

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www.raynauds.org.uk

World Scleroderma Day! Hoogen from the Netherlands, explained some of the basics about scleroderma, and what was needed to improve patient care across Europe discussed. Dr Posada De La Paz from Spain presented findings from a pan European project to assess the economic impact of scleroderma and comparative differences.

The most moving part, for everyone, were the personal testimonies, particularly from

Beata Garay Toth from Hungary who, in the last decade, was so dramatically and swiftly impacted by the debilitating progression of her disease.

Annelise Ronnow from Denmark, Joep Welling from the Netherlands and Nicola Whitehill from the UK were struck with scleroderma, in one form or another, in the ‘prime’ of their lives and clearly articulated that early diagnosis and further research were crucial.

Testimony must be made to the stamina and determination of all who took part in this whirlwind 36 hours experience particularly those from the UK, who were lucky to be re-scheduled onto the last Eurostar out of Brussels that night despite a myriad of cancellations and a 4 hour delay spent in a hot terminal building, due to burning tyres being rolled into, and blocking, the channel tunnel.

To celebrate World Scleroderma Day, The Scleroderma Society held an art competition and invited all forms of art to be entered under the theme “Unveiling Scleroderma.”

Alan Brain (www.alanbrainart.com), contemporary artist and teacher, judged the competition as he is a supporter of the cause. Congratulations go to Alex Marler, who won first prize, and Pauline Frank, who was runner up.

Alex Marler “My artwork for ‘Unveiling Scleroderma’ is an image of a person who has scleroderma, like myself. They are taking off the veil, and revealing that underneath we are all normal human beings trying to find ways to manage life with this disease. We are vulnerable but brave and looking forward to the future. The future is where we will find answers, solutions, new treatments and support.”

Alan Brain said “It captures revelation. It also holds a vision of hope, even defiance and pride. I know from personal experience as many of us do, how difficult it can be to admit to having scleroderma, it's like walking down the street naked, the painting says that too.”

Pauline Frank “Unveiling Scleroderma' brought to mind my husbands very positive attitude to scleroderma and Raynaud’s. He draws back the curtains and gets out into the world.

He is always cold so I put in some snowdrops which also symbolise hope. The stoney path shows a difficult journey and willows trees for sadness and then over the mountains a dawn sun brings warmth.”

Alan Brain said “Frank's painting tells a story of hope, love, and the beauty of life tinged with sadness. It is a beautiful, very touching painting that is clearly from the heart. It is a painting to treasure forever.”

info@raynauds.org.uk

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Conference

This year’s theme, UNVEILED, started with a few people peeping out from their umbrellas as they arrived at the venue. The Manchester location, unfortunately was true to its reputation and we started with ‘light rain’.

The Barnes Wallis building in Manchester was the perfect light and airy venue to hold our 107 delegates and even though there was a chill in the air to begin with, we had Heat Holders blankets at the ready to share with those who needed them.

Professor Ariane Herrick, from Salford Royal Hospital, hosted the occasion and, as Chair for the morning, opened up the conference with a ‘welcome’ and positive outlook for the future. She suggested the day’s topics would include information about treatments to help those with the conditions, sharing information, hearing about the latest news and research into the conditions, learning some self management tips and techniques and experiencing some treatments. Professor Herrick also thanked the RSA and the Scleroderma Society for staging the event and for continuing to support scleroderma and Raynaud’s research.

We were delighted to host internationallyrenowned speakers throughout the day and their insights covered Raynaud’s and scleroderma from top to toe! We listened to an array of views on recent treatments, a session on children and young adults and how the gut can affect the lungs in scleroderma. We had a series of smaller

breakout sessions after lunch which interactivity and opened up the floor to take more ‘personal’ questions in order to address any challenges or issues they face within the fields of Pulmonary Arterial Hypertension (PAH), skin & ulcers and practical encouragement on empowering people to better ‘co-manage’ their conditions with those involved in their professional care. The day finished with a trio of new research studies, about which questions from the floor were invited.

Presenters also kindly made themselves available for people to approach them during the breaks.

During the day, delegates were encouraged to visit the supporters and sponsors stands, which included personal skin advice from Dorothy, Denise & Esther from Changing Faces, the skin camouflage service, Keith Hunt MBE gave out wonderful massage treatment and techniques and to those who wanted advice we had Department of Work and Pensions (DWP), expert Sheena Taylor.

Will Gregory (physiotherapy), Tonia Moore (Chief vascular technician) and Liz Wragg (Specialist Nurse) also joined us from Salford Royal Hospital, to share treatments and testing methods.

We had retail suppliers from Heat Holders, Astec International and the RSA Shopshowcasing some innovative products to benefit those delegates who have one or other of the conditions. The two charity stands, the RSA and Scleroderma Society, offered information, support and advice during the lunch break. Helen Nutland &

Gordon Shelby from the Burton Support Group also gave us a fantastic display of activities and events put on by their group.

We also had a ‘photography booth’, which aimed to capture the life and challenges of delegates who were comfortable to share these physical issues with us . Their actions will help us update our literature and website and illustrate our information with relevant and topical images.

Those who stayed for the Gala Dinner on Saturday night were treated to a four course meal, and for the first time both charities gave out awards to some very deserving people. Special congratulations go to our award winners that were announced. The winners were: Volunteers of the year Rosemary Goodwin & Nicola Whitehill Fundraisers of the year Greg Tytherleigh & Alex Spark Supplier of the year Martin Birchall Support group of the year Burton on Trent Support Group To see why they were winners, go online at http://www.raynauds.org.uk/ conference2015 and take a look at the presentation.

The following provides a brief overview of topics in the UNVEILED programme but please go online at www.raynauds.org.uk/conference 2015 to watch the presentations or contact info@raynauds.org.uk if you would like a pdf copy of the presentations available emailed, or sent out as hard copy in the post.

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www.raynauds.org.uk

Conference Professor Neil McHugh, Consultant Rheumatologist, RNHRD. What is Raynaud’s, what is scleroderma?

Leading the CTD service at Bath, Professor Neil McHugh, our first speaker, described the conditions but in somewhat a more ‘hands on’ way than previous conferences.

He reiterated for us the methodology of diagnosis and the classification criteria used by the medical profession to describe individual cases. He listed some treatments and, interestingly, described Raynaud’s and scleroderma as a spectrum, which was a good way of looking at a very complex set of conditions. He pointed to many of the symptoms, of which most of the readers of this summary will be fully aware, but he did suggest regular, if not occasional, monitoring of blood pressure, as an increase on the right side of the heart may be a later complication and should be treated promptly.

Morphoea (a form of ‘localised’ scleroderma) – which is not limited soley to the skin and impacts on underlying tissue too! She debunked the myth that it burns itself out after 2-7 years – it does continue into adulthood.

Dr Elizabeth Renzoni, Consultant Respiratory Physcian, Royal Brompton Hospital, London.

Can the gut affect the lungs in scleroderma?

Dr Renzoni’s laboratory research has focused on the study of genetic associations with lung fibrosis, giving an address on the topic of ‘if the gut can affect the lungs in scleroderma’. The answer is ‘yes’ and she described how the two oesophageal sphincters playing a part with acid and non-acid reflux. Dr. Renzoni pulled no punches over the importance of diagnosis of interstitial lung disease, as it can be severe and progressive, but proper assessment at one of the main centres should pick it up if it is present and treatment, once initiated, will help.

BREAKOUT SESSIONS Dr John Pauling, Consultant Rheumatologist, RNHRD, Bath.

Professor Ariane Herrick, Professor of Rheumatology, Salford Royal NHS Foundation Trust.

Skin and ulcers.

Dr. Eileen Baildam, consultant Paediatric Rheumatologist, Alderhey Children’s Foundation NHS Trust.

Children and Young People.

Dr Baildam has a special interest in scleroderma in childhood and has lead on several important research projects at Alder Hey Children’s Hospital and developed guidelines for the conditions. As a consultant paediatric rheumatologist, she underlined the problems for children and younger people with these conditions. She highlighted the quite significant differences in both the conditions and the diagnoses of them along with the necessity of early diagnosis and prompt start of treatment. It was pointed out that children can also have a wide spectrum of symptoms and described the assessment scores and some of the activity tools used to measure and monitor treatment and its efficacy. She gave figures of the incidence of the different types and focused on affects of

This was a very informative session where delegates were encouraged to bring up topics that affect them on a daily basis in areas such as calcinosis, digital ulcers (DUs), Raynaud’s, and foot care. Some key learning points included that keeping skin moist with an emollient isn’t sufficient and when dealing with calcinosis, consider alternating creams so the skin doesn’t get used to one particular make; using cotton gloves for extra protection and avoiding certain jobs (around the house) where you can is also recommended. Avoid using shower gels, soaps or cleaning products that are heavily laden with chemical and synthetic fragrances as these can exacerbate the condition.

For ulcers on the feet, good footwear is a ‘must’, treating ulcers in this area can be a challenge due to compression when walking. Nailfold capilliary can indicate that you have scleroderma but it doesn’t always correlate with the associated symptom

manifestation e.g. if you have poor nailfold capilliaries, it doesn’t always indicate severe scleroderma (symptoms).

Scleroderma can affect pigment in the skin and the amount of melatonin. If you have vein problems or a change in skin colour you should always seek medical advice.

Iloprost treatment was also discussed - its two roles of actively treating digital ulcers and when an individual has the signs of an ulcer or suffers from Raynaud’s. It is generally given in winter months and administered intravenously in hospital under medical supervision.

Dr Iain Armstrong, Nurse consultant, Sheffield Teaching Hospital.

Professor Janelle Yorke, Principle Investigator, University of Manchester.

How to feel in control of your breathing -a guide for people who are breathless.

As chairman of the Pulmonary Hypertension Association (PHA UK), Dr Armstrong talked about the links between the conditions and the association with connective tissue disease (CTD). We think of breathlessness and the increase in breathlessness - an excuse for not being able to do as much as we used to because of age or illness so it’s important to develop criteria on which to measure the changes. It can become a vicious circle as you stop doing what you used to do because you don’t want to feel out of control or breathless.

The aim of the presentation was to show how breathlessness can be managed on a day to day basis to help minimise its affect on quality of life. Professor Yorke explained the importance of breathing exercises to assist the muscles involved which help improve or sustain our fitness. We in the audience ‘tried and tested’ a few of the exercises.

continued overleaf . . . info@raynauds.org.uk

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Conference Senior Sr. Julie Ingall & Sr. Paula White, Rheumatology Clinical Nurse Specialist, Queen Alexandra Hospital, Portsmouth.

Shared decision making This session outlined the steps a patient can take in order to be actively involved in their own care and decide the best plan for them based on the options available to them.

Senior Julie Ingall cited that in interviews with patients and doctors after a medical appointment, there was often a disconnect between the two. 85% of doctors thought they involved their patients in decision making but only 50% of patients felt the

same way! She suggested we all have moments when leaving the consultant’s appointment thinking, ‘I should have asked about . . .’ Personalised care plans can really help in allowing this process to be engaging and, if used, factually detail your information and guide you for your next consultation. Promoting patient choice and control provides information to the consultant and improves planning (and care) all round. Senior Paula White has helped develop the ‘scleroderma care plan’ for patients at the hospital in Portsmouth and it has been used for 6 months as a pilot and was launched at the conference. The hope is that it will be used by many to guide and empower them in their future care. Both

Research into cause and mechanisms ‘Shedding light on scleroderma’

1) 2) 3)

Nailfold Capillaroscopy Laser Doppler imaging Multispectral imaging.

Chair of the RSA trustees, Professor Jeremy Pearson, chaired our afternoon session and started the proceedings by explaining how the merger will take place and introduced Sue Farrington who has been appointed SRUK’s Chief Executive and has the role of merging the two charities over the coming months. In the meantime, the RSA and the Scleroderma Society will continue to work on joint projects until they merge – hopefully in early 2016.

1) 2) 3)

Andrea Murray, Arthritis Research UK Career Development Fellow, Salford Royal Hospital.

Physicist Andrea Murray gave a paper on the current diagnostic tools and treatments.

Three techniques are the subject of further research at present:

charities have copies of the diary that can be downloaded from their websites for use more widely by scleroderma patients, thanks to the Queen Alexandra Hospital.

He listed several techniques that he and his colleagues are using or introducing to help provide answers to those questions, but briefly: 1)

Professor Chris Denton, Consultant Rheumatologist, Royal Free Hospital, London.

2)

Emerging therapies 3)

Equipment looking at bloodflow in the nailfold, which is important for those with scleroderma, is now very sophisticated.

Nailfold Capillaroscopy is the important process of looking at the nailfold and observing damage to the blood vessels.

The laser Doppler is measuring blood flow in digital ulcers and can also measure their rate of healing – they are now looking at working on individual fingers! Multispectral

imaging casts light on sections of skin, which then reveal what is going on in that area. It can measure the amount of oxygen in the skin in just one finger and has been able to differentiate between patients with scleroderma and those without.

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What do we see?

Where do we want to go?

What do we need to get there?

Professor Chris Denton gave an upbeat report of the current state of play. He emphasised that scleroderma is now treatable, if not necessarily curable.

He pointed to the success of immunosuppression as a really beneficial technique and he told us about three recent trials that have been encouraging. He mentioned two new drugs that are showing huge promise and reminded us that the new treatment involving stem cell transplantation is not suitable or safe for everyone. Looking to the future, he said there are likely to be more targeted therapies (either targeting specific organs, or specific processes) and more drugs under development. Tasmanian goat serum may also hold a few secrets – watch this space!

Dr Francesco Del Galdo, Senior transitional Research Fellow, Leeds.

Horizon scanning

We see tissue fibrosis and small vessel vasculopathy.

We want to target the problems identified (especially the vascular aspects) We need methods of identifying the severity of the conditions and their effect on different organs.

They are now able to measure some markers both in urine and serum and this should enable an advance in treatment methodology.

The conference was a great success this year.

The standard of speakers was excellent and we are so grateful to those who gave up their time to come to the conference and share their research and findings, hints and tips. The interactive break out sessions worked really well in the smaller groups, the feedback and thanks we have received has been wonderful and extremely rewarding for all the teams involved. We are always interested in your feedback to improve the conference programme or running so if you have any ideas, please email info@raynauds.org.uk with your comments.

Dr. Del Galdo, University of Leeds, presented a paper on scleroderma diagnostics. He showed us a beautiful sunset in his home country, Italy, and asked: www.raynauds.org.uk

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: Do you know if dementia and scleroderma are related? My dad suffers from scleroderma and his memory has been failing him a lot recently. He had depression last year but seems to have recovered from this now.

A: The brain is not affected by scleroderma, as far as we are aware, and so it is unlikely that there is any link directly between scleroderma and the development of dementia. However, any chronic medical illness can impact on concentration and mood and this can result in some memory problems. If you have specific concerns then you should discuss these with your father’s doctor as it may be appropriate to organise further assessment.

Q: Do you know if having a gluten free diet could help with Raynaud’s symptoms?

A: Although diet can influence Raynaud’s, there is no specific association with a gluten free diet. Antioxidant vitamins and other supplements may benefit Raynaud’s and might be recommended as part of a general treatment approach. Gluten exclusion is important if you have confirmed coeliac disease as it cures the condition but if this is not present then it is unlikely to help. An indirect link is that in coeliac disease weight loss can be a problem and this could worsen Raynaud’s and so treatment of this condition by gluten exclusion would be beneficial.

Q: Do you know if there is a relationship between problems with the gut and Raynaud’s?

A: Raynaud’s is not specifically associated with gut problems but there are certainly ways in which a link could occur. First, conditions such as scleroderma are associated with Raynaud’s in almost all cases of systemic disease (systemic sclerosis) and the majority of patients with systemic sclerosis will have some gut info@raynauds.org.uk

complication such as oesophageal reflux, heartburn, bloating or constipation. In addition, it has been suggested that sometimes the blood vessel spasm that occurs in the extremities during a Raynaud’s attack might occur in some internal parts of the circulation and this could include gut blood vessels. However, this is not proven by research studies and so remains rather speculative at the present time.

Q: Can Raynaud’s make the skin more allergic to metals? I have just been diagnosed with Raynaud’s and am wondering if it safe to wear rings.

A: There is no link between metal allergy and Raynaud’s although the puffiness of the fingers that can occur in Raynaud’s, most often due to blood vessel leakiness associated with attacks of Raynaud’s, can make rings tight and difficult to remove.

Likewise, secondary Raynaud’s can be associated with scleroderma or arthritis which can lead to more severe swelling of fingers and joints and so removal of rings may be advised. However, in general, it is safe to wear rings even if you have Raynaud’s phenomenon.

Q: Can Raynaud’s cause nerve damage?

A: Loss of sensation in the fingertips is a common and troublesome symptom associated with severe Raynaud’s. This occurs in both primary Raynaud’s and also in secondary forms of the condition that are associated with other underlying diseases such as lupus or scleroderma. The loss of sensation likely reflects temporary impairment of function of the sensory nerves in the fingers, due to Raynaud’s, and can be a major nuisance. In secondary Raynaud’s, there might be additional nerve damage as part of the associated medical condition and this can be investigated by nerve condition tests that measure the speed and size of electrical impulses travelling in the nerves. In severe cases specific treatment or further investigation might be recommended.

Q: I have Raynaud’s and find my knuckles swell up a lot. Do you have any advice for this? They seem to swell mostly at night, why is this?

A: Raynaud’s phenomenon leads to changes in blood flow to the fingers and can be associated with swelling of the fingers due to associated leakiness of the small blood vessels, which can even occur in primary Raynaud’s that is not associated with any other disease. However, if there is swelling of the knuckles, this does raise the possibility that Raynaud’s could be associated with arthrosis and this should be investigated further. Simple blood tests would be the first assessment and then an X-ray or ultrasound scan might be suggested, you should discuss these symptoms with your conductor.

Q: Is it safe to be in the sun if you have scleroderma?

A: In general sun exposure does not worsen scleroderma but nor does scleroderma protect you from the possible adverse effects of sun exposure. Sun screen should always be used. If you have any overlap features of lupus then sun block must be used and sun exposure avoided as it can cause skin and other aspects of lupus to worsen. If there are features of SLE or dermatomyositis then high factor “sun block” must be rigorously applied. Finally, patients with scleroderma often notice darkening of the skin, due to activation of the pigment cells in the skin that respond to sunlight. Some patients wish to avoid this effect and so sun exposure should be limited as much as possible. In addition, immune suppressive drugs may increase risk of skin cancer and your doctor will advise you about this and any specific precautions required.

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Edgar Stene

Congratulations go to Charlotte Secher Jensen who won the 2015 Edgar Stene Prize! The title of this year’s competition was “Taking control of my life - working together with health professionals to achieve my personal goals”. The competition is an annual event run by EULAR (The European League Against Rheumatism) and the Standing Commitee PARE (People with Arthritis/Rheumatism in Europe), named after Edgar Stene who was a pioneer in the field of rheumatism.

41-year-old Charlotte is married and lives in Gjern, a village close to Silkeborg in Denmark. She has two children: a daughter aged 16 years and a son aged 13.

patient association, but the topic hadn’t been quite right for her to participate. This year she saw the post on Gigtforeningen’s Facebook page and the topic caught her interest.

She works part time, for 12 hours a week, as a sales supporter in a consultant firm. Her tasks include booking meetings, and optimising transport and logistics.

“I immediately felt that I had something to share,” says Charlotte.

“I chose to write because I wanted the health professionals at the hospital to learn how much a doctor or nurse’s way of acting can change not only a patient’s experience of the consultation, but also how the patient feels when he or she leaves the hospital.”

Over the last few years Charlotte had read about the Edgar Stene Prize in the magazine LedSager from Gigtforeningen, Denmark’s

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Edgar Stene

Living in the moment

by Charlotte Secher Jensen I still remember that day. The day I was diagnosed with rheumatoid arthritis. My thoughts were all over the place. They whizzed round and round in circles, in utter confusion… Why? What was it all about?

And what now? That night – the night after that day – is what I remember the best. How I wept silently into my pillow until you could have wrung it out. How I crept into the kitchen in the dark so as not to wake the family, and turned the thermostat on the radiator up full. I remember the reassuring, monotone clicking of the radiator and the warmth, the meditative shushing noise it made, like the sea, calming, giving me a kind of artificial comfort.

I sat myself down awkwardly on the hard kitchen floor and leant into the radiator’s unfeeling arms, which gave me a warm, weak hug. I sat there in the dark heavy hearted. I felt the burn on my back where, I hoped, I would one day have my angel’s wings in my fantasy world. The burning pain gave me a few seconds’ peace from the sharp stabbing I felt in all my limbs.

My tears dried up. Something happened.

My thoughts folded their wings together; I took a deep breath and got determinedly to my feet. A battle was raging in my mind between light and dark. And the light won!

I intended to live in the moment and in the future. This was my life. My decisions. But I quickly realised that I needed something to lean on. I had a long journey ahead of me.

I soon learnt, the hard way, that there are three different types of hospital visit. Those where I leave the place no wiser than before. A waste of time, waste of money and waste of the present moment. Then there are the visits where I leave in tears – either because I have not been seen or listened to, or because I have had to behave too much like a chronically ill patient.

Perhaps it was one of those visits where I had to have examinations and blood tests that I simply did not have the strength to endure. That felt like a violation of my exhausted body and frayed mind. With a doctor or a harassed nurse who, I felt, held my future life in their hands. He or she

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would barely look at me, looking down instead at the notes that they should have read – or at least skimmed through – before I walked in the door. Tired eyes and noncommittal comments, “Your blood tests look fine. So you should be alright.” I feel as if I am just a number. Number 13 in the never-ending queue of patients. They leave – I leave – with hopes dashed.

And then there is the last kind. The best kind. My favourite visits. Those where the doctor or the nurse asks, “How are you?” and I answer, “I am very well.” They nod, lean back attentively and say, “And how are you really?” I am aware of the person beneath the white coat, the warmth of their eyes, that they want me to be well, to have a good life, in spite of the excruciating pain and powerlessness. They have read – or at least looked through – my notes. They remember my name. I am not a number.

Those visits are the light at the end of the tunnel… When you are way down in the dumps and the nurse smiles warmly at you and says that everything will be alright. That I can phone any time for a chat about anything at all. That although she doesn’t have rheumatism herself, she recognises – because she has seen it all before – the powerlessness, the fear, the helplessness about medication and side effects and all the rest of it that I end up spilling out because it has taken hold so deep within me, and at long last there is someone who knows how to press the right buttons.

I feel the weight lift from my shoulders.

Everything loosens up. It’s going to be alright. My shoulders relax and I can breathe freely again. She is careful inserting the needle, comforting me all the while. She gives me hope and belief that the present moment is OK, the future will be better, that it is possible to learn to live with rheumatism.

It takes time. Body and mind alike have to get used to the upheaval. And so do family and friends. You are no longer the same.

Your body creaks and groans. I sit nervously in the waiting room and look around me. I am surrounded by people young and old. I

am sure they all have rheumatism. Some have their loved ones with them. Others sit there alone and wait. In a way it helps, knowing there are others with the same symptoms as me, but at the same time I feel their pain. The uncertainty that we all have about the present and the future. No doubt we all have the same burning desire to make the best of our diagnosis, of our lives and to take control of our illness?

I sigh… Because of what is written in my notes, because I didn’t get on with the lady doctor I saw last time, because I don’t want her ever to write another word in my notes.

I had strength enough and was able that day amidst all my hopelessness, disappointment and unbearable pain, to say no. The nurse and I had a good talk over the telephone as she had promised. She took the call in spite of her heavy workload. I am grateful for that chat and nervous about who I am going to tell my life story to this time. Every time it feels like an exam – a 10-minute exam in which I have to relate as much as possible before my time is up. Not so much as a “Goodbye. See you again in 3 months. Don’t forget the blood tests.” I pretty well know in advance what it will be like. I feel anxiety weighing heavily on my pounding heart, and my invisible protecting wings cradling me so tightly I can barely breathe.

I catch my breath when my name is called.

I look up anxiously and meet a pair of warm eyes. There he stands: the doctor, welcoming, leaning casually against the doorframe in a T-shirt, white coat unbuttoned, jeans and trainers. Still, I am on my guard. I follow him, wearily. Sit down heavily on the chair and try to swallow, but my mouth is dry. I am almost unable to start my story all over again.

continued overleaf . . .

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Edgar Stene The doctor leans forward in his office chair.

He leafs through my notes and I feel the hope grow within me. I look at him, surreptitiously, and my warped mind cannot stop thinking that it is not good for a person to have so many little books stuffed into the pocket of a coat. Bad for the back. I meet his friendly eyes with a cautious smile, which only widens when I hear the sentence: “So, how are you?” I hear myself lie – I answer him, “I’m OK.” He rolls his chair towards me – the books knock gently against my knee. He asks again, with a sparkle in his eyes. I feel the relief and realise that I am smiling up into his eyes, even though the tears are trickling slowly down my cheeks. Politely, he hands me a tissue, smiles encouragingly and examines me carefully but firmly, with a comfortable pressure. I relax. He scans my jaw, wipes

away the clear gel from my cheek with a practised gesture, and comments, jokingly, that it isn’t doing a lot for my hairstyle. I smile. No matter that it is still sticky all down my neck; he is forgiven. He hands me another tissue, so that I can try myself to remove the last traces without completely ruining my hairdo.

While he is talking, explaining, reassuring, he holds my gaze. We are both present in the moment. The tears stop. I hear myself tell the truth. I even manage to recognise that it will not get better. That it is not going to go away. But that it will still be alright. I am OK. He listens, he sees me, he hears what I say. His words give me hope and his interest helps honest words find their way from my thoughts to my tongue. He carefully examines every joint of my fingers, and his warmth, vitality and charisma flow out to

feed my recognition that there is a life with rheumatoid arthritis. Maybe not the life I had dreamed of, but a good, full life.

I leave the hospital with a smile on my face, even managing to spare one or two for the patients in the waiting room. Outside, the sunshine dries the last tears from the corners of my eyes. I take a deep breath, straighten my back, feel my inner strength awaken and walk purposefully over to the car park out into the world.

I am ready to live in the moment and to meet the future. It is possible to travel with rheumatism in life’s rucksack, provided you have help to pack it properly. I embrace the present moment and I embrace life!

2016 . . .

If Charlotte’s story has inspired you, why not enter the 2016 Edgar Stene Prize? It was launched at the European Congress of Rheumatology in London in June and the topic is “Living with a rheumatic or musculoskeletal disease (RMD): How I take action to enjoy life to the full”.

Anyone with a RMD is invited to write about their personal experiences and their individual coping strategies to live life to the full despite being affected by a rheumatic or musculoskeletal disease. What are the top tips of people with RMDs to live as independently as possible, achieve important personal goals and to actively take control of their life? What have they been able to achieve and how? Each small step counts and we look forward to hearing many inspirational stories!

Each national jury will select and submit the best entry from their country, which will be sent to EULAR. The EULAR Jury will select the 2016 overall Stene Prize winner and announce it by 15 March 2016. The Edgar Stene Prize winner will be invited to attend the Opening Plenary Session of the EULAR Congress in London and is awarded a prize of €1 000. EULAR provides the winner with travel to London and hotel accommodation in London for up to 4 nights as well as an invitation to the Congress Dinner. In addition, the second ranking essay will be awarded €700 and the third ranking essay €300.

If you would like to enter, please submit an essay not exceeding 2 pages (A4) to the Scleroderma Society

by Monday 30th November.

Essays can be emailed or posted.

Email: info@sclerodermasociety.co.uk Post: The Scleroderma Society, Bride House, 18 – 20 Bride Lane, London, EC4Y 8EE For more details, please visit www.eular.org

Good Luck!

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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

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.

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

info@raynauds.org.uk

For more information about our Local Support Contacts, please contact the office.

Are you interested in helping those with Raynaud’s & scleroderma in your local area? Please get in touch with us if so!

Are you in the Burton-on-Trent area? There is a great support group in the area who have recently celebrated their 10 year anniversary. Why not pop along to one of their events to meet some friendly faces? Upcoming events are: Colour Therapy - Tracy Sawbridge Weds 19th August Shake, Rattle & Soul - Pirelli Stadium, Burton-on-Trent Sat Nov 14th, 7.30pm • £10 a ticket.

For more information, please email Helen at: helen10burton@yahoo.co.uk

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Children with Scleroderma

scleroderma, talk about their condition and gain peer support whilst the parents were very happy to be involved in training the ‘next generation of paediatric rheumatologists to help improve scleroderma recognition and management!’

Doctors pictured left to right (with a group of patients of all ages who took part in the day): Wijh Abusrewil, Tania Amin, Ellen Mosley , Katie Hunt, Eve Smith, Ethan Sen and Kamran Mahmood

Educating future Paediatric Rheumatologists on how to recognise, monitor and treat children with scleroderma and Raynaud’s The Raynaud’s and Scleroderma Association was pleased to support an educational event led by Doctors Clare Pain, Eileen Baildam and Marina Anderson at Alder Hey Children’s Hospital in Liverpool. The occasion focused on the recognition, treatment and longer-term management of scleroderma in children, with the day’s attendees being paediatric rheumatology trainees from all around

the UK, including Liverpool, Leeds, Newcastle, Bristol, Nottingham and Birmingham.

Scleroderma has a wide disease spectrum and the Liverpool team felt that it was crucial to involve patients in the teaching event. The children and young people involved were contacted in advance of their clinic appointment to see if they would be happy, and wished to be, part of the event. Nine patients participated on the day with all agreeing that they really enjoyed it. Some of the children were particularly pleased that they had been able to meet others with

Understanding the genetic changes in linear morphoea skin

drug targets for the disease, with less chance of relapse after treatment.

Linear morphoea is a form of scleroderma in which children get patches of thickened and inflamed skin that progressively becomes harder over the course of several years.

Although parents and children have sometimes associated injury or infection with the disease, the reality is that no-one knows how linear morphoea arises.

Understanding the cause of disease is important as it can locally invade muscle and bone, causing severe functional disability in addition to the cosmetic problems associated with the appearance of the disease.

We have already examined how morphoea skin cells are different to skin cells from a normal location and have discovered that skin cells are different in disease regions compared to normal regions on the same patients. We are currently writing about our recent discovery, which is that the proteins secreted by normal cells can restore the morphoea skin cells as close as possible to the unaffected skin cells. However, to find a specific molecular target for drug treatment, we are currently investigating the genetics of this disease.

There is a distinct lack of understanding of the causes of scleroderma and related diseases like linear morphoea. Therapies for these diseases focus on treatment of redness and inflammation, without considering the initial changes that cause the disease and because of this, successful treatment is often followed by relapse. Our work specifically focusses on understanding these initial defects in linear morphoea skin cells, as this would be a good avenue to discover new 14

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Specifically, we are currently recruiting patients to take a skin sample from a disease region of skin and comparing this to the blood from the same patient. This allows us to find out the genetic changes in the disease region that may cause the disease.

Finding out these genetic changes will be a major step forward in finding the causes of linear morphoea and scleroderma, and, therefore, potential treatments.

In the afternoon, Dr. Marina Anderson invited some adult patients, and led a teaching session focused on systemic sclerosis. This is more rare in children than adults, but nonetheless it is crucial that paediatric rheumatology trainees are able to diagnose and treat it. The feedback was positive with many of the trainees saying that they found this to be an invaluable training day and one commented that it was ‘extremely useful to be able to see patients with different disease subtypes and discuss how the patients presented, and have been monitored/managed.

Scleroderma is rare and the teaching we have had before has been pretty ad-hoc’.

The Liverpool team also has a strong research interest in scleroderma and the trainees were also taught about the use of scleroderma research tools.

linear morphoea community, the more likely we are to find the genetic changes that cause disease. If you want to get involved in this study, which is currently recruiting in Great Ormond Street Hospital, London, then please contact Ryan O’Shaughnessy, r.oshaughnessy@ucl.ac.uk or phone: 0207 905 2182 to begin the recruitment process.

Skin and blood are taken at the dermatology outpatients clinic and should take no more than thirty minutes.

Thank you for considering participating in this important research.

Ryan O’Shaughnessy

Livingstone Skin Research Centre, Immunobiology, UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH

The more samples we can obtain from the www.raynauds.org.uk

News

Unveiling disease processes in lung fibrosis associated with scleroderma Background Lung disease is one of the most common and serious disease complications in scleroderma (Systemic Sclerosis; SSc), affecting over 70% of patients, and is the leading cause of death. Lung disease associated with SSc (SSc-ILD) often affect the delicate connective tissue (interstitium) of the air sacks (alveoli), with a build-up of scar tissue, termed pulmonary (or lung) fibrosis. Pulmonary fibrosis, which is common in many interstitial lung diseases (ILD), alters the normal structure of the lung and hinders the gas exchange between the air and the circulation, necessary for efficient oxygenation of the blood. The extent and severity of pulmonary fibrosis can vary widely between patients and also in the same patient over time.

The reasons why pulmonary fibrosis develops in certain individuals, and not in others, remain poorly understood. What is clear is that many factors, genetic and environmental, interact in the biological processes leading to lung fibrosis. The processes are complex, involving many different cell types, with fibroblasts and myofibroblasts being the central effector cells responsible for the actual scar formation.

forming mucus protein, was strongly linked with IPF, but is not associated with SSc-ILD susceptibility, severity or progression[1], demonstrating that distinct processes are involved in these two fibrotic lung diseases; and finally at the chromosome level, telomere (chromosome ends) shortening is associated with disease severity in SSc-ILD, suggesting an involvement of cell aging, in which this phenomenon happens naturally. This may also explain the often late onset of SSc. In a different approach, through our work with fibroblasts, initially using microarray analysis where the expression of many thousand genes can be studied simultaneously, we have been able to identify several areas with possible importance in the pathogenesis of SSc [2]. These include an imbalance in the NOX4/SOD2 oxidant/antioxidant system in cells, and suppressed expression of interferon response genes. These studies also informed a possible involvement of epigenetic regulation, identifying a novel “drugable� epigenetic mechanism, BET-protein activity, underlying fibroblast disease behaviour. This research is at a very early stage, however our data support BET-protein inhibition could be a promising therapeutic strategy in SSc-ILD.

The study At the Interstitial Lung Disease Unit (ILDU), Royal Brompton Hospital, we have a close collaboration with the Rheumatology Department at the Royal Free Hospital, to study disease processes involved in SSc-ILD, with the main objectives; a) to identify genetic and circulating (blood, bio-) markers to be able to better predict disease progression and outcome, and b) to delineate disease processes in order to aid the development of effective therapeutic interventions. Our approach is to study both patient genetics and quantitative measures, e.g. levels of molecules in the blood (biomarkers), and compare these with detailed clinical characteristics, such as autoantibody type and measures of lung function and disease development. While genetic and biomarker studies have been performed in the ILDU laboratory for decades, the recent RSA funded grant period has also seen the development of a fully equipped cell culture and molecular biology facility. Here we focus on the biology of fibroblasts isolated from lung tissue of patients and healthy controls, to identify critical differences, which may explain key disease behaviours, and which may be targeted for the development of efficient treatments.

The future At the Brompton, we will continue to build our SSc patient group to increase the power of our genetic studies, and test genetic variants identified through genome-wide, candidate gene and fibroblast expression studies. We are extending our work on circulating biomarkers in this cohort, with the aim to improve early prognosis and to gain further insight into the pathogenesis of SScILD. We will continue to study a potential role of BET-protein inhibition in SSc-ILD. As BET-protein inhibition is gaining interest in the fibrosis field, we are excited to be able to contribute to this area with research specifically related to SSc-ILD.

Supported by generous funding from the RSA, we have during this period focused our work in three specific areas: i) genetic and genomic studies; ii) global (extensive) lung fibroblast gene expression and related studies; and most recently, iii) epigenetic regulation (see below) of fibroblast gene expression and behaviour, identifying a potential novel avenue for therapeutic treatment in SSc-ILD. Below, in a brief summary are some highlights of our findings.

Full publications 1) Stock CJ, Sato H, Fonseca C, Banya WAS, Molyneaux PL, Adamali H, Russell AM, Denton CP, Abraham DJ, Hansell DM, Nicholson AG, Maher TM, Wells A U, Lindahl GE, Renzoni EA. Mucin 5B promoter polymorphism is associated with idiopathic pulmonary fibrosis but not with development of lung fibrosis in systemic sclerosis or sarcoidosis. Thorax 2013 68:436-441.

2) Lindahl GE *, Stock CJW *, Shi-Wen X, Leoni P, Sestini P, Howat SL, Bou-Gharios G, Nicholson AG, Denton CP, Grutters JC, Maher TM, Wells AU, Abraham DJ, Renzoni EA. Microarray profiling reveals suppressed interferon stimulated gene program in fibroblasts from fibrotic lung. Respiratory Research 2013 14:80 (* Contributed equally).

We thank the RSA for the generous support of these studies.

We have been able to advance our understanding of the disease processes in SSc-ILD in several ways. In our genetics and genomics association studies we have generated data showing: a link between the HIF1A gene, coding for an oxygen sensing regulator within cells, and lung gas exchange measures, suggesting effects on alveolar function; a genetic variant in the MUC5B gene, coding for a gel info@raynauds.org.uk

Dr Gisela Lindahl, Dr Elizabeth Renzoni and Professor Athol Wells

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Fundraisers Well done and a huge THANK YOU to all our London marathon runners! We are delighted to announce we have a place in the 2016 Virgin London Marathon. If you, or someone you know, would like to run on our behalf, please tell us, in no more than 200 words, why you would like to run it for the RSA. All entrants must be over 18.

Thank you!

Sheila Murray raised over £3,700

Emete Bilal (pictured with her two children) raised over £750

James Macdonald raised over £1,150

David and Hilda Armstrong walked the 96 mile West Highland Way in rain, snow and not much sun, in order to raise money for Calcinosis Research at Manchester University by Professor Richard Winpenny, Professor Ariane Herrick and their team. They raised over £3,000, with donations coming in from Europe and Australia!

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Fundraisers

Colin Byers walked 74 miles from Glan Clwyd hospital to Salford Royal hospital in memory of his wife, Christine, and raised £1,900. Pictured is Colin, his family, friends and some of the team at Salford Royal who took care of his wife.

Olivia Bevins, Liz’s daughter, ran the Edinburgh marathon and raised over £1,000!

Thanks also to the following:

Laura and Paul Williams ran the Manchester 10k and raised over £900

Sian Morgan hosted a night at Garage in Swansea with the Final Fling Band and raised over £300

Candice Martin who ran the Leeds Half Marathon and raised £138 Mr and Mrs Phillips who requested donations to the RSA, instead of golden wedding anniversary gifts, and raised £350.

Congratulations on your anniversary!

Sarah Amies ran the Hasting’s half marathon and raised over £570 Alex Spark who held a charity fun day and raised £710 Iain Wishart who gave various talks and raised £140 John and Shirley Lynch who raised £470 by a coffee morning and selling bags Heather Lee who hosted a bingo night and raised £311 Chris Emery who ran the Brighton half marathon and raised £60 Karen Reeve who held events for RAM and raised £185

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.

Thank you to all of our wonderful fundraisers, we truly appreciate each and every one of you! info@raynauds.org.uk

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Diet

Here at The RSA, we often get people asking if there is anything they can do to help manage Raynaud’s, scleroderma and related conditions at home. We have put together some information below on diet, and will discuss various self-management aspects in future edtions, so keep reading!

It is important to maintain a healthy diet, the key to which is balance, with a healthy mix of fruit and vegetables, starchy foods, proteins and dairy foods. A healthy diet has many consequences but also 70% of our immune system is located in our digestive track.

It is essential to eat a rainbow of foods and eat two to three servings a week of omega-3 rich fish, such as kippers, salmon, mackerel, sardines and tuna. Eliminate pro-inflammatory foods from your diet, which includes sugar, corn, soy, sunflower, peanut and grape-seed. Berries are rich in antioxidants, as is green tea.

• Protein aids the body’s recovery and is particularly recommended if you are recovering from surgery or suffer with ulcers.

• Supplements such as gingko biloba and evening primrose oil can have a positive effect if you suffer from Raynaud’s, as might ginger, spicy foods, garlic and magnesium.

• If you have scleroderma and struggle with digestion, focus on eating lighter meals more often, making sure to use lots of sauce.

Recipe for dry mouth: Red Lentil Soup with Lemon Serves 6 Ingredients: 2 cups split red lentils, picked over and rinsed well 1 tablespoon turmeric 4 tablespoons coconut oil 1/2 teaspoon salt 1 large onion (about 2 cups) diced 2 teaspoons ground cumin 1 1/2 teaspoons yellow mustard seeds 1 cup chopped cilantro Juice of three lemons, or to taste 1 large bunch of spinach leaves, chopped To serve: cooked (warm) brown rice, non-fat plain Greek yogurt Method: Put the lentils in a pot with 7 cups water, the turmeric, 1 tablespoon of the coconut oil, and 1/2 teaspoon salt. Bring to a boil, then lower the heat and simmer, covered, until the lentils are soft and falling apart - about 20 minutes.

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• Pineapple contains an enzyme called bromelain, which is a powerful anti-inflammatory and also helps us digest protein rich foods, so is worth trying if you struggle with digestion.

• Don’t forget to stay hydrated!

A recent study in the Journal of Functional Foods found that the Montmorency cherry – a variety of sour cherry – seems to reduce levels of uric acid, which can have an impact on joint pain. Cherry juice is also rich in antioxidants, high in melatonin and has antiinflammatory powers. It is down to these many qualities that cause it to now be hailed as a fantastic source of help to alleviate pain, swelling and sleeplessness. Cherry juice can either be drunk or can be bought in pill format from health stores, so if you are affected by these issues, why not give cherries a go?

Please remember, everybody is different and what is right for one person is not necessarily right for another. It is best to speak to your GP before beginning any major lifestyle changes.

Puree with a hand or standing blender. Add more water until the soup is the consistency you like, then taste and add more salt if needed. Keep the soup warm/hot.

While the lentils are cooking, prepare the onion. In a skillet over low heat, cook the onion in 2 tablespoons of the remaining coconut oil along with the cumin and mustard seeds, stirring occasionally. When the onions have softened, after roughly 10 or 15 minutes, add the cilantro and cook for a few seconds before removing from the heat. Add the onion mixture to the soup, then add the juice of the lemons, one lemon at a time until the soup has a nice bit of tang. Add more salt to taste at this point if needed.

Just before serving, add the last of the coconut oil to the skillet.

When hot, add the spinach and a good pinch of salt. Stir well, and cook just long enough for the spinach to collapse. Serve by placing a scoop of rice in each bowl, then soup, spinach, and a dollop of yogurt.

Thanks to the Dana-Farber Cancer Institute who kindly let us reprint this from http://www.dana-farber.org/Health-Library/Red-Lentil-Soup-withLemon.aspx. It was adapted by 101 Cookbooks from Deborah Madison's Vegetarian Cooking for Everyone.

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Shop

The Gloves are on!

Tracey Spray, from the Raynaud’s and Scleroderma Association, talks to the supplier of one of the shops best selling products, Terry Warrener, and discusses his latest product. usability comfort and, to some extent, even the colour offer was scrutinised.

You’ve spent so much time developing this product, now it’s launched what do you get up to in your spare time?

Outside of my business, I spend as much quality time as possible with my family, grandchildren and friends, as well as enjoy gardening, playing golf, cycling, walking and the occasional glass of Merlot.

We didn’t just take Terry’s word for it, but gave 5 pairs to some of our willing members who were happy to trial them for us and give us feedback. One member commented:

As many of you will already be aware, we sell a range of unique Natural Silver Fibre products internationally that benefit people with Raynaud’s and scleroderma, as well as aiding those with related autoimmune conditions and health issues such as: Diabetes, Varicose Veins, DVT, Dermatitis, Eczema, Chilblains & Athlete’s foot. All with the added benefit of the natural silver fighting perspiration, bad feet odour & bacteria.

In this edition of Hot News, we interviewed Terry Warrener, our supplier of the Natural Silver fibre socks and gloves to tell us about his exciting new product, the 12% Silver Seamless Glove.

So how did your new product come about?

I have been working with scleroderma study groups in Germany & Holland to help develop something specifically for their purpose, as they needed something that had improved ‘movement’ due to some people having poor hand and finger function associated with frequent swelling and cold hands.

The request was that whilst we made the fingers of the gloves larger, they still needed a soft level of compression and improved comfort.

So how long ago did the project start?

We started the development towards the end of 2012 and testing in early 2014, working with a key trial group to ensure fit,

What is the difference between the current silver glove and the new 12% Silver Glove?

The natural pure silver content has been increased to 12%, the silver content is now only woven on the inside of the glove, previously it was interwoven within the whole fabric. Silver has a 95% Far-Infrared reflectivity rating giving "Inner Energy”, which provides naturally occurring warmth that invigorates and improves the warmth of the fingers and hands.

As there is more silver directed to the skin, there is therefore higher heat retaining properties and this has been identified in trials. There is improved stretch to the fingers to make them easier to get on and off, they are thinner and lighter in weight and have a more even compression, all due to the way the product has been woven.

Should hands or fingers swell then the gloves will expand with them. The product is completely seamless and fully machine washable.

This new 12% Glove is available in a choice of colours (black or beige) along with a new dark grey, which topped the colour poll during a recent conference survey. Dark grey gloves will be available to purchase at the end of July. ‘Overall we’re absolutely delighted with the development and final results’.

‘Much better fit than my other gloves. They don’t feel as rough either. Marked difference in the heat retention during and after use!

Longer cuff covers my wrists too, which is helpful and feels nicer. I would recommend these highly and it has even helped with my joint pain because my hands heated up so quickly that it soothed my joints. Very pleased and impressed and love that they’re lightweight and black. These gloves, like my others, actually work with all touchscreens.

Brilliant!’ Helen, Liverpool If you would like to know more about the new product, have a question for either Terry or ourselves, get in touch here at the RSA on info@raynauds.org.uk, or to take a look at the silver fibre products and order them, please visit rsa-shop.co.uk

We are now selling Snuggle Up blankets from Heat Holders.

These extra large blankets (180cm x 200cm), with incredible softness, help you to wrap up warm when you feel the chill. They are available in Antique Silver, Hot Chocolate, Moon Rock and Black.

Keep your eyes peeled as we are currently trialing new products and hope to have them available from our shop over the next few months! info@raynauds.org.uk

HOT NEWS

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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

We are sorry to mention Christmas so early in the year, but we have started to sell our Christmas cards.

“Skating Around The Tree” costs £3.50 for a pack of ten, with free P&P.

Executive Director of RSA Trading Co Ltd Geoff Baggott Patrons Sharron Davies MBE, Roger Jefcoate CBE DL Nick Ross, David Wilkie MBE

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.

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 Head Office 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 Shop: www.rsa-shop.co.uk

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

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.

Copyright This newsletter is the copyright of the Raynaud’s & Scleroderma Association (RSA). All rights are reserved. No part of this publication may be reproduced or transmitted in any ways or by any means, electronic or photocopying without prior permission of the copyright holder.