SRUK Member's Digital Magazine Spring 2020 by Scleroderma & Raynaud's UK

SRUK NEWS COVID-19: The Things You Thought You’d Never Need to Know

Precision Medicine for Scleroderma

Thank you Key Workers: Join us in showing your appreciation

Growing Up With Juvenile Scleroderma

Digital Ulcers

Capturing people’s experiences in their own words

Issue 17 Spring Edition 2020

Dear Supporters

Event Calendar 2020 Events There have been several changes to our events calendar due to the Coronavirus pandemic – the below events are those that are currently confirmed but will be subject to changes as Government guidelines and restrictions change. Please be aware that the conferences are to be confirmed and we will try to offer an alternative way to access the content and information we had planned if we do have to cancel them. JUNE

OCTOBER

Scleroderma Awareness Month

Saturday, 24 October 2020 SRUK Newcastle Conference* International Centre for Life, Times Square, Newcastle upon Tyne, NE1 4EP

SEPTEMBER Saturday, 12 September 2020 SRUK Bath Conference* Macdonald Bath Spa Hotel, Sydney Rd, Bath, BA2 6NS 13 September Great North Run half marathon – places are still available

4 October Virgin Money London Marathon 11 October Royal Parks Half Marathon – places are still available 26 - 30 October Scleroderma Photography Exhibition

* Please be aware that our September and October conferences are still to be confirmed and we will try to offer an alternative way to access the content and information we had planned if things do change in the meantime.

Support Groups Some of our support groups are continuing with their activities remotely to help members stay connected during these uncertain times. If you would like more information, please contact us.

For more information about any of these events go to: www.sruk.co.uk/events or contact the team on 020 3893 5998 1

I hope you are all keeping safe and well as you stay home and adjust to a new way of living for the time being at least. While the SRUK team and I are all working from home, we want you to know that we remain very much open for business as usual. So please do continue to call or email us, if you have any questions or concerns. Our major priority right now is to make sure you have the right support and information you need to make any necessary changes and adjustments to your everyday lives. In the beginning we were concerned about the lack of clarity for rare autoimmune conditions over which patients exactly were at very high risk, so as part of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) we wrote to various Government ministers, including Lord Bethell and Jeremy Hunt, Chair of the Health Select Committee.

Sue Farrington

Medical Q&A – Coronavirus Special

COVID-19: The Things You Thought You’d Never Need to Know

COVID-19: Help and Support For Our Community

COVID-19: 2020 Vision - Living Under Lockdown

Precision Medicine

We also wrote to the Chief Pharmaceutical Officer and Matt Hancock about the issue. At the time of writing this, we understand that issues with hydroxychloroquine supply should have been resolved, but if you have any problems let us know.

The Sandpit – Scleroderma & Raynaud’s UK Collaboration to Develop Innovative Outcome Measures for Scleroderma

Living With Chronic Pain

These are anxious times and I wanted to thank all of you for pulling together to carry on supporting us, whether that’s through your donations, taking calls, sharing our information, being part of the conversation, or running a solo local run in place of the cancelled events you had trained for.

Thank you Keyworkers: Pull out and display our poster to show your appreciation

Digital ulcers

Raynaud’s Awareness Month 2020

Fundraising emergency appeal

Juvenile scleroderma

Support contacts

Fundraising – Our Review of the Year

Thank You

Over the last few weeks, we became aware that some patients were unable to collect prescriptions of hydroxychloroquine. As you know, hydroxychloroquine is currently being studied as a potential treatment for COVID-19. We prepared a press release asking the Government to act early to guarantee these supplies to patients, which was picked up by The Daily Mail and The Guardian.

My thanks to every one of you for showing such amazing community spirit in supporting us and one another. I’m looking forward to when life returns to some form of normality, but in the meantime take care and stay safe. Sue sue.farrington@sruk.co.uk @farrsue01

Coronavirus The Things You Thought You’d Never Need to Know

Precision Medicine for Scleroderma

08 2

Medical Q&A – COVID-19 Special We are understandably receiving a high number of enquiries surrounding COVID-19. Our team have come together to provide the information that you need, and we will endeavour to answer some of the most popular queries within these pages.

“I am 69 with systemic scleroderma. Should I stay home? I still need to shop and collect medications. Many people living with systemic sclerosis are classed as “extremely vulnerable” to COVID-19. The NHS has already written to over one million people in the UK, instructing them to ‘shield themselves’. ‘Shielding’ means staying at home and avoiding all non-essential contact with others. If you have not received a letter and you are concerned, contact your doctor for advice. Given that you are aged 69 with scleroderma, you may be advised to shield for the prescribed period. You can register for help with deliveries of food supplies and medications whilst you are shielding, by visiting the Government website here: https://www.gov.uk/ To access primary care you should telephone the surgery, and if needed you will be called back by a clinician. Their website may have more information regarding services during this time. You can also contact your community pharmacy for health advice. “I have systemic sclerosis and some other health issues. I take Mycophenolate Mofetil daily, plus other medications. What should I do?

Certain medications used to treat scleroderma may heighten the risk of COVID-19, although you should continue to take these as normal unless otherwise directed. If you have a weakened immune system, your body may find it harder to fight the virus, so you could be at risk of more severe complications. You may already have been contacted if you are considered to be ‘extremely vulnerable’. The British Society of Rheumatologists has also produced the following guidelines to help assess individual levels of risk: Risk stratification guide Immunosuppressive medication

Patients to shield • Corticosteroid dose of ≥20mg (0.5mg/kg) prednisolone (or equivalent) per day for more than four weeks • Cyclophosphamide at any dose orally or within last six months IV • Corticosteroid dose of ≥5mg prednisolone (or equivalent) per day for more than four weeks plus at least one other immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant (e.g. JAK inhibitors)*** • Any two agents among immunosuppressive medications, biologics/monoclonals** or small molecule immunosuppressants with any comorbidity****

Patients to self-isolate or maintain social distance at their discretion

Patients to maintain social distance

• Well-controlled patients with minimal disease activity and no co-morbidities on single agent broad spectrum immunosuppressive medication, biologic/monoclonal** or small molecule immunosuppressant

• Single agent 5-ASA medications (eg mesalazine)

• Well-controlled patients with minimal disease activity and no co-morbidities on single agent broad spectrum immunosuppressive medication plus Sulphasalazine and/or hydroxychloroquine • Well-controlled patients with minimal disease activity and no co-morbidities on a single agent broad spectrum immunosuppressive medication* at standard dose (e.g. Methotrexate up to 25mg per week) plus single biologic (eg anti-TNF or JAKi)** or ***

• Single agent6mercaptopurine • Only inhaled or rectally administered immunosuppressant medication • Hydroxychloroquine

Do people with Raynaud’s have a higher chance of contracting COVID-19? Should I be working from home?

At the time of writing, Government measures state that everyone who can work from home should do so. This does not include our vital key workers, including: all NHS staff, those working in medicine and personal protective equipment production, education and childcare staff, food chain workers and other key public service officers. There is currently no evidence to suggest that people with Raynaud’s have a higher chance of contracting COVID-19, however it remains vital to stay home unless essential: for exercise, shopping or medical needs. If you have secondary Raynaud’s and are taking additional medication (i.e. immunosuppressants), you may be in the high-risk group, however you should be contacted to confirm this. If you are still worried, please contact your doctor for more information.

I’m worried about the quarantine measures that have been put into place and the relentless stream of news reports is making it worse. How can I protect my mental health? These are uncertain times for everyone, and it is easy to feel overwhelmed and anxious due to constant media updates and new figures. It is important that each of us takes steps to ensure that our mental wellbeing does not suffer during this time, and WHO has published a document on how to deal with stress and worry during this period. A key recommendation is to read information updates only once or twice a day, specifically to remain informed and prepared to look after your loved ones. Deciding what time of day to check the news and turning off mobile phone alerts can help you feel less anxious. Since a huge amount of misinformation exists, it is critical to stick to reliable news outlets and trusted sources of information, such as the NHS website. Feelings of isolation are also likely to be rife within our community, with many people not living with their loved ones and unable to catch up with their friends face-to-face. This can be overcome by regularly checking in with each other on the phone, and using resources such as Skype and Facetime to keep connected.

“I am taking hydroxychloroquine and I have heard it may protect me from COVID-19, is this true?

• Sulphasalazine

* Immunosuppressive medications include: Azathioprine, Leflunomide, methotrexate, Mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, cyclophosphamide, tacrolimus, sirolimus. It does NOT include Hydroxychloroquine or Sulphasalazine either alone or in combination. ** Biologic/monocolonal includes: Rituximab within last 12 months; all anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab and biosimilar variants of all of these); Tociluzimab; Abatacept; Belimumab; Anakinra; Seukinumab; Ixekizumab; Ustekinumab; Sarilumumab; *** Small molecules includes: all JAK inhibitors – baracitinib, tofacitinib etc **** Co-morbidity includes: age >70, Diabetes Mellitus, any pre-existing lung disease, renal impairment, any history of Ischaemic Heart Disease or hypertension. Patients who have rheumatoid arthritis (RA) or CTD-related interstitial lung disease (ILD) are at additional risk and may need to be placed in the shielding category. All patients with pulmonary hypertension are placed in the shielding category NB This advice applies to adults, children and young people with rheumatic disease. We do NOT advise that patients increase steroid dose if they become unwell

Since Mycophenolate Mofetil is an immunosuppressant, the guidelines suggest social distancing; although this is only a guide, and you must take all medications and diagnoses into account. It is important to remember that COVID-19 may lead to difficulty breathing and even pneumonia, so if you have lung involvement it may be harder to recover.

Hydroxychloroquine is one of the drugs undergoing trials as a treatment for COVID-19. At the time of writing, the medication is not licensed for use in this way, and this will remain the case unless it is shown to be a safe and effective treatment. This means that we may not know either way for a long time. If you are taking hydroxychloroquine, do not assume that you are protected from this virus. It is also important not to change the dosage without speaking to your doctor. You should continue with social distancing, and shielding will remain necessary for anyone who is considered “extremely vulnerable”. Doc Spot will return in the next issue of SRUK News

If you have a question you would like to ask Professor Denton, please email info@sruk.co.uk

Or you can connect with us on Twitter, Instagram and Facebook. /WeAreSRUK

COVID-19: The Things You Thought You’d Never Need to Know With cases first being reported to the World Health Organisation (WHO) from China at the very end of 2019, Coronavirus (COVID-19) has rapidly come to the global fore, becoming the biggest pandemic of our generation. Almost all nations have implemented tighter policies to help contain the spread of the virus and prevent local health services from becoming overwhelmed. The UK Government has introduced new measures to protect our health and to ensure that everyone has access to high-quality medical care, whether this is for an infected individual or someone living with a long-term condition such as scleroderma. Everyone’s lives will be affected by these measures, and it is necessary to recognise how we can all play a role in curtailing the rate of transmission to protect both our own health and that of others; alongside looking after our mental health and wellbeing whilst adapting to these changes. COVID-19 is the official name of this new disease, caused by a previously unknown virus called Severe Acute Respiratory Syndrome Coronavirus 2 (Sars-CoV-2). Coronaviruses are a group of viruses that often cause common colds, as well as more serious respiratory illnesses (that of the lungs), such as pneumonia. The critical symptoms to look out for are either a high temperature or a new, continuous cough; but other symptoms may include fatigue, nasal congestion, aching and a loss of taste and smell.

Image: BBC News

Because such a large proportion of the SRUK community have lung involvement, many will be considered to be ‘extremely vulnerable’ to COVID-19. People within this group will need to ‘shield’ themselves, as their immune systems may not be strong enough to fight the virus, and this group will have to stay at home until told otherwise, and not have any face-to-face contact with anyone outside the home, except for people who provide essential support. From 23 March 2020, people will have been contacted by their healthcare team to receive instructions on how to shield themselves. This will happen gradually as clinics will be reviewing their patient registers to identify those within this vulnerable group.

For everyone else, it is essential to practise social distancing. The purpose of this is to reduce the number of people becoming newly-infected with the virus. By asking anyone who can work from home to do so, closing public places and reiterating that people must remain two metres apart when outside the home, this will limit the number of daily interactions, reducing the likelihood of the infection being passed on to others. It is critical to follow these rules, since research conducted by WHO indicates that one person with coronavirus can infect 2.5 others, which is much higher than the infection rate of seasonal flu at 1.3. Social distancing is different to isolation. You should isolate if you experience a high temperature or a continuous cough, which could indicate that you may have the virus. If you do have these symptoms, do not go to your GP surgery or hospital. Instead, call 111 or visit https://111.nhs.uk/covid-19

COVID-19: Help and Support For Our Community sruk.co.uk/find-support

The health and safety of everyone who is affected by scleroderma and Raynaud’s remains our top priority. More than ever, we are here to support you during the coronavirus pandemic and beyond. We know that many people with scleroderma and Raynaud’s are worried about COVID-19 (coronavirus) and how it may affect them, their family and friends. We also appreciate that information via news channels and social media can feel overwhelming and often seems unclear.

SRUK is the only charity dedicated to improving the lives of people affected by these conditions. We have worked with leading experts in the NHS to develop relevant information about coronavirus and summarised this for our community, to ensure it is as accurate and up-to-date as possible. Your health situation is unique to you, so if you have any specific questions or concerns, please contact your doctor. We want to assure everyone affected by scleroderma or Raynaud’s that we are still here to provide help, support and information. We are working with RAIRDA (Rare Autoimmune Rheumatic Disease Alliance), Public Health England and the NHS to ensure you have the very latest news and advice, as well as tips on ways to cope with the situation.

Helpline

Help and support during the coronavirus pandemic In order to continue to support our community, we provide a range of information and support services. We understand that you may have lots of questions surrounding scleroderma, Raynaud’s and COVID-19, and now, more than ever, we are here to help during these uncertain times. The latest information and updates for our community are all available here: sruk.co.uk/about-us/news Our Helpline remains open, thanks to our amazing team of volunteers. Although they are not medically qualified and therefore cannot offer medical advice or opinions, they are always there to listen and provide support.

Our free Helpline offers confidential support to anyone affected by scleroderma and/or Raynaud’s. If you need to talk, we’ll listen. 0800 311 2756 365 days a year 9am - 7pm

We anticipated increased pressure on the Helpline during this time, and our team are coping brilliantly, taking questions ranging from vulnerable group categorisation, accessing local support services when self-isolating and taking immunosuppressant drugs; to concerns about mental health for people living alone. We have also developed a Q&A to provide more tailored information where necessary. Support groups Our local support groups are for anyone affected by scleroderma or Raynaud’s. Sometimes, a diagnosis can make you feel alone and afraid, so connecting with others with similar experiences can be extremely helpful. In accordance with Government advice, we have had to cancel all face-to-face meetings, however many support group leaders are now organising virtual meetings to help keep everyone connected. For more information, please call 020 3893 5998 or email: info@sruk.co.uk Another way to access support is via our online community. You can chat directly to other people 24-hours-a-day, seven-days-a-week, on our Health Unlocked forum that can be found here: https://www.sruk.co.uk/find-support/our-online-community/

2020 Vision – Living Under Lockdown Across the UK, along with the rest of the world, we are facing an unprecedented situation, with most of us now required to stay home at all times. These sudden and dramatic changes are unchartered territory for all of us, since we have never experienced anything like this before. Terms such as ‘isolation’ and ‘lockdown’ may be necessary; but hearing them repeatedly does little to help in the quest to stay positive. To suddenly be confined to our homes and forced to change the ways that we shop, socialise and access services has naturally come as quite a shock. For now, we must remain at home, shielding ourselves to the greatest possible degree from the threat of COVID-19. With countless people and families in exactly the same situation, we are quickly finding new ways to support one another. We reached out to our community and asked for some tips and ideas for facing these difficult times, and as ever, we are incredibly grateful for all of your responses! Try something new “Learn a new language, there are plenty of free resources. Take up crochet or knitting, they are cheap and good for the hands.” Hannah Thanks to technology, shielding need not necessarily stop you from trying something that you have always wanted to do. If you use social media, you may have noticed that many instructors are now livestreaming or uploading tutorial videos online, often for free. From beginners’ guitar tuition, learning to crochet or seated yoga, there is probably something for everyone. Do what you love “I like knitting and baking, but my real passion is gardening. So long as I wrap up well and keep moving even though slowly; I am fine, and the fresh air and gentle exercise is good.” Janet “I crochet and I knit!” Barbara We all have our passions in life. Sometimes, due to daily routines and life’s ups and downs, it is very easy to put everyone else first, never really having the time to do things for ourselves. Now that many of us have a little more time, we can reconnect with these hobbies and passions, which can boost our wellbeing and even distract a little from the world around us. Reach out! “I am working at home, but I am on a constant video call to my colleagues.” Liz Telephone the people that matter and get the whole family together via group video chat. It is definitely worth learning some tech skills to keep you connected with the important people in your life, and our children and grandchildren really do make the best instructors. Record this experience “I’m starting a blog so I’m putting all my focus into that. I can talk about everything and use it as a space to release energy.” Lauren Many people find keeping a journal to be therapeutic, and this can help in maintaining a sense of perspective during difficult or stressful times. A diary can be written or shared online for family and friends, or you could start a video diary instead. Could you help in the fight against coronavirus? Living with a health condition such as scleroderma need not necessarily prevent you from playing a part if you are able to do so. There are many initiatives up and down the country that need volunteers to help provide services to the elderly and vulnerable. Certain roles can sometimes be carried out safely from your home, such as telephone support and online befriending. If you would like to volunteer, look for opportunities locally, or try reaching out to your council, parish or hospital for advice.

Precision Medicine Why we have prioritised this as one of our four core themes The term ‘precision medicine’ describes the customisation of treatment to an individual patient, so as to deliver the most optimal care based on that person’s medical needs. With a condition like scleroderma, which can be described as existing on a spectrum, it is important that the principles behind precision medicine are applied, in order to deliver a tailored package of treatment that is unique to the condition of the individual patient. This is because one person who is living with scleroderma may have noticeable gastro-intestinal involvement, although their lungs will remain unaffected; whereas in another person with the same condition, both their heart and kidneys may be severely affected. It is therefore important to ensure that the care each person receives is adapted to how their condition is progressing. It should be noted that this does not mean the creation of new drugs or medical devices for each patient. It is more about utilising these in a specific combination to achieve the best outcomes. Precision medicine for scleroderma The high degree of complexity of this condition means that it is often difficult to ascertain to what extent a person’s life will be affected by scleroderma. The difficulties surrounding the prediction of a person’s scleroderma trajectory means that it is challenging to prescribe the best treatment combination to each individual. It is therefore crucial that investments are made into work that supports the accurate stratification of patients into sub-groups that accurately reflect their current circumstances and future prognoses, since there are at present a multitude of barriers to doing so. Stratifying patients relies heavily on data concerning genetic, lifestyle and environmental factors, as well as a strong understanding of how these elements combine to result in a person’s presentation of scleroderma. A huge amount of resource is thus needed to support precision medicine. As scleroderma can present in so many different ways, there need to be more refined stratification strategies that allow the grouping of patients particularly at a molecular level, such as through markers that can indicate early and specific organ involvement, as well as inform clinicians about which organs may be affected in the future. Several

biomarkers have been identified, but clinical investigation into this realm of research has been limited. By defining precision medicine as a core theme of investment, SRUK hopes that this can be accelerated, and clinical benefits can be realised. Research that has been conducted over the last three decades has facilitated the advancement of a number of treatments, ranging from vasodilators and immunosuppressants, to those that focus on calcinosis and digital ulcers. Interest from the pharmaceutical industry has led to the development of therapeutics aimed at various manifestations of scleroderma, such as pulmonary hypertension or liver fibrosis. Improvements in treatment can only be achieved by gathering more detailed knowledge of the biological processes that contribute to the symptoms, and this is essential for enabling precision medicine, as it may be possible for specific pathways or presentations to be targeted by certain combinations of treatment. There must also be more robust ways in which responses to treatment can be assessed, in order to determine the effectiveness of treatment strategies. This is especially important since some treatments can often be toxic. When someone is prescribed a medication that can have unpleasant side effects, it is important that this can be done knowing that there will be significant long-term improvement. The huge benefits of harnessing precision medicine have already been demonstrated within the SRUK community.

Glossary: Stratification: the identification of patients who have distinct presentations of scleroderma, e.g. gastrointestinal or pulmonary involvement, or who exhibit certain responses to treatment. Molecular level: the smallest units within our cells, such as proteins. These are examined to understand their role and how they interact with each other to lead to certain biological outcomes in the body. Biomarkers: these are naturally-occurring molecules or other characteristics in the body that can be used to indicate the presence of certain processes taking place, or the presence of disease.

Scleroderma and Raynaud’s UK collaboration to develop innovative outcome measures for scleroderma

Professor Denton said he hoped to see innovative solutions that leverage the latest technology come out of the workshop. “New tools may help identify cases that may, or may not, respond better to emerging therapies. In a very diverse disease like scleroderma the concept of ‘precision medicine’ to match specific drugs to patients most likely to benefit is an important goal.”

Involving patients Also taking part in the Sandpit were two patients, Georgina Pantano and Edith Brown, acting as mentors at the workshop and bringing to it the patient perspective.

As our article on precision medicine shows, developing effective therapeutics for patients with scleroderma and Raynaud’s has proved difficult, with new drugs often failing clinical trials because there are no high-tech genetic tests to evaluate their efficacy.

Georgina said she felt that having patients take part in the Sandpit was hugely beneficial. “Being a rare disease, some people were not as familiar with the condition. Being able to help educate them felt extremely important and invaluable.” She also said that hearing the proposals made her feel optimistic about their potential to help patients like herself.

A patient perspective by Edith Brown

Participants at A clinician treating breast the Sandpit cancer or prostate cancer patients, for example, can use the results of a blood test to give advice on what drug therapies have the highest probability of working for them and even whether they should treat their condition at all. However, the reality for patients with scleroderma and Raynaud’s is very different. To achieve this degree of precision will require objective outcome measures. Outcome measures enable clinicians to assess how a patient is responding to treatment and to assess the efficacy of potential new drug treatments. Currently there is a critical unmet need in the development of objective outcome measures for scleroderma.

Driving change through collaboration Modernising the evaluation of potential drug therapies was the focus of a three-day workshop, ‘Scleroderma Diagnosis Sandpit’ hosted by SRUK at the end of February in London. Twenty-four researchers from medicine, bioscience, engineering and data science came together to form new teams to find innovative approaches to the current challenges in treating scleroderma. The goal of the event was to consider what non-invasive diagnostic tools could be developed with multi-disciplinary teams working together to develop a proof of concept for the diagnostic tool. “Despite the progress we’ve made in the last 20 years, treatment for scleroderma remains inadequate,” said Professor Christopher Denton, Head of Centre and Consultant Rheumatologist, University College London, Division of Medicine. “We know from previous clinical trials that drugs used routinely for skin and lung fibrosis are helpful to some extent, but do not help all cases and the benefits are limited.” The failure of potential scleroderma drugs in clinical trials has been of particular frustration for clinicians like Professor Denton, which he and others blame, in part, on the lack of robust outcome measures. “We are limited by current assessment tools such as the skin score, which is limited by subjectivity, as well as the time needed SRUK worked closely with for training and standardisation,” Denton said. “We need to the Engineering and Physical make sure that new treatments are evaluated in the best and Sciences Research Council (EPSRC), most robust way so that we can make more progress and who helped identify participants for the discontinue approaches that do not work.” workshop and who will co-fund the most So, how might researchers modernise the evaluation of promising research proposals to develop a new treatments for scleroderma? Answering that question proof of concept for a diagnostic tool. on behalf of patients is one of SRUK’s goals. The event was facilitated by KnowHowInnovation, a company that “As a small charity, we reflected on our role developed the Sandpit method, which in driving change and how we could help is an interactive approach designed to accelerate progress from bench to bedside for drive and encourage lateral thinking the benefit of patients. We recognised that we and radical approaches to address could act as a catalyst, bringing people together research challenges.

from different disciplines to think in new ways and move the field forward”

“When I first heard about SRUK’s planned Sandpit it struck me that the aims and the process were entirely consistent with the underlying philosophy of SRUK i.e. the recognition of the importance of accurate early diagnosis, a commitment to supporting medical research and the practice of involving patients in every aspect of their work. All scleroderma patients would agree that an early and accurate diagnosis is the most vital part of their personal scleroderma journey. With this in mind I was delighted that the aims and objectives of the Sandpit were firmly focussed on overcoming the challenges of accurate diagnosis. When I was invited to attend the Sandpit as a “sample” patient I was delighted to take part. However, in the days before the event, I was unsure how I, as a retired geography teacher, could possibly make any meaningful contribution to a discussion on medical research? I needn’t have worried, as during the very first meeting we were simply asked to tell our own story, to explain our early symptoms and describe our own journey to diagnosis. It became obvious that we the patients are “experts” at coping with the disease, the tests and clinical appointments and living with the day-to-day challenges of scleroderma. I hope our contributions were useful. During the following sessions I gained a fascinating glimpse into the world of medical research. The participants displayed an astonishing level of commitment and compassion and it was indeed a privilege to be involved. I wish them well in their endeavours.”

Diagnostic path forward “In rare disease research, we know that real progress can only be achieved when we work together,” said Sue. “But what the Sandpit demonstrated to me is how that progress can be truly accelerated by bringing people together from totally different disciplines.” Sue remarked that she was impressed by the quality of the output generated in three days. “It was inspiring to witness the connections being made as people from completely different disciplines spotted opportunities to add value to one another’s work. We are optimistic that the work generated will lead to some novel solutions for tackling the diagnostic pathway for scleroderma.” The teams will now complete a full funding application. Professor Denton, Professor Herrick and Dr Zahid Latif, from the SRUK Research Advisory Board will be part of the panel that judges the applications. Funding will be awarded to the most promising research proposals to develop a proof of concept for the diagnostic tool. Based on the panel’s recommendations, SRUK and EPSRC will award funding in the range of £100K-£120K for proof of concept development taking place over a year.

Who are the EPSRC? The Engineering and Physical Sciences Research Council (EPSRC) is the main funding body for engineering and physical sciences research in the UK. They invest in research and postgraduate training to build the knowledge and skills base needed to address the scientific and technological challenges facing the nation.

Sue Farrington, CEO of Scleroderma and Raynaud’s UK.

Living With Chronic Pain Chronic, or long-term pain is a silent epidemic that exists on a global scale. Chronic pain is thought to affect around 28 million adults in the UK, which means that up to 43% of us could now be living with pain, although this may not always be obvious to others. Chronic pain may be only one aspect of a long-term condition such as scleroderma, however this may in itself equate to a severe but invisible illness or disability. It is not always easy for people to understand, but this has become a health issue on a global scale. Pain often fluctuates in its intensity. Raynaud’s pain will be felt mainly during an attack, and medications may help to alleviate this. The pain caused by scleroderma may vary according to disease activity, as well as other factors beyond our control, such as exhaustion and stress. There may be no quick fix, however there are many approaches for dealing with the pain, and different therapies may help different people. As ever, it may be necessary to try various methods, sometimes in combination, before there is any notable improvement.

“I am one of the lucky ones, as my Raynaud’s pain is managed by slow-release Nifidipine twice a day. I am not saying it has calmed it completely, but the attacks are no way as bad. The pain I used to get and the loss of feeling to my fingers and toes was excruciating, but with the Nifidipine I am in a happier place.” Julie

The pain cycle: living with chronic pain - planning, prevention cure Chronic pain impacts upon life in many different ways. It can alter mood, disrupt sleep, affect relationships and even lead to anxiety and depression. Any of these effects may end up making the pain feel worse. When pain flares up, this can trigger other symptoms such as fatigue, which in turn allows the cycle to continue. Taking steps to manage or interrupt this cycle of pain can help you to regain some control.

Spot the triggers Recognising the triggers that are likely to make the pain worse is crucial in managing flare-ups; although this is only effective if you can control these aspects of life. Since we cannot change the weather on a cold day, it may be impossible to prevent a Raynaud’s attack. On the other hand, the pain of many autoimmune conditions is exacerbated by activity and ‘overdoing it;’ so it is important to acknowledge this, and to take steps wherever possible to slow down. Because chronic pain is long-term, you may begin to recognise early warning signs that the pain is about to flare up. Acknowledging these warnings and taking early action can enable you to take some control over the situation.

Self-help techniques Self-help techniques are non-invasive and drug-free. They are designed to target and help control the pain by reducing the anxiety and stress that can aggravate it, interrupting the cycle. Relaxation techniques including meditation and visualisation may also help to address some of the knock-on effects of chronic pain, such as sleep deprivation. There are various self-help techniques that may be effective, including: • • • • • • •

Deep breathing exercises Relaxation Positive imagery Thought distraction Focussing on positive thinking Moderate exercise Practising mindfulness

Taking your mind off it Pain management on the NHS Because chronic pain is a feature of so many health conditions, pain management is covered by an umbrella of NHS services, and anyone with Raynaud’s or scleroderma who is affected for 12 weeks or more may be able to access a service designed to help. Milder painkillers (analgesics) are available over-the-counter for short-term relief, with stronger ones available on prescription when needed.

Antidepressants for chronic pain Antidepressants may be prescribed even if you do not have depression. This is because certain medications have been shown to help with some types of pain. Although the reasons remain unclear, they are thought to somehow reduce pain signals. It is likely that you will start on a low dose, to reduce the risk of side-effects.

Pain clinics Pain clinics are designed to offer treatment and support, with a view to helping you develop effective pain management techniques. Not all hospitals offer this service.

Pain management programmes The pain clinic may make a referral to a pain management programme. The basis of this approach is psychological, using techniques designed to enhance quality of life with the pain, rather than trying to make it go away forever. This involves small-group sessions, looking at exercises, mindfulness and peer-support.

Trying to ignore chronic pain may be idealistic, but reducing your awareness of it helps to put you back in control. Distraction sounds overly simple, however it can be effective. This could be a gentle hobby, watching a film or playing a classic album. Alternatively, try focussing on plans for the future, when the flare has subsided.

Make a pain plan When the pain flares up it can be difficult to think clearly, so draw up a plan in advance that details what to do when this occurs. Include any medication to be taken and when, plus distraction suggestions such as CDs, playlists or movies, along with deep breathing exercises and relaxation techniques.

Remember … no two people are the same! Because pain affects everyone in different ways, we may never have one single, textbook approach for dealing with it. It is therefore important to find out what works best for you as an individual. Your doctor or nurse specialist may be able to help, by looking at your situation and suggesting some alternative pain management techniques. It is possible that you may have to try more than one approach to help identify what works best for you.

With special thanks to the members of our community who helped us to produce this article, and to Away With Pain and Action on Pain for their support. 12

Digital Ulcers Digital ulcers can be an extremely debilitating aspect of life with scleroderma. They can be painful, slow to heal and detrimental to emotional and social wellbeing. Researchers funded by the Scleroderma Clinicals Trials Consortium (SCTC) sought to understand how digital ulcers can affect a person’s life, discussing pain, aggravating factors and practical measures taken when ulcers develop. The purpose of this investigation was to gather information from which a patient reported outcome questionnaire could be designed, to support the future testing of new treatments. The discussions also enabled the study’s authors to create poems to capture the experiences of the participants.

Digital ulcers in patients with systemic sclerosis Digital (finger and toe) ulcers are common in people with systemic sclerosis, and around half of patients may develop an ulcer at some time. Although we have treatments to prevent and heal ulcers, these are not always successful, so improvements are needed. A major challenge to testing new therapies is how we decide in a clinical trial whether the treatment is helpful or not. This is typically done by clinicians visually inspecting the ulcer with the human eye. What is needed is to understand how digital ulcers impact on patients and then to design a new questionnaire (a ‘patient reported outcome instrument’) to capture what really matters to patients and to show that treatments are effective.

Impairment of physical and social activity Digital ulcers had far-reaching effects on people’s ability to function, as some struggled to continue with work, hobbies and day-to-day activities. The ulcers could also cause reduced hand function, making everyday tasks more challenging.

Factors aggravating occurrence, duration and impact Whilst some participants had only ever had one ulcer, others had multiple ulcers occurring regularly. People also reported the weather as a factor, since slight temperature variations or cold weather could be painful, although ulcers healed better during summer.

Managing and adapting to ulcers Despite the heavy burden that ulcers could impose on people’s lives, the study participants reported how they had found ways to adapt. These included devising new ways of doing things that avoided causing more pain and enabled them to continue with their lives and activities.

Future steps from this work We hope to use the information from this study to create a ‘patient reported outcome instrument’ or questionnaire, to ensure that we can measure the things that are important to people who experience digital ulcers; which can be used when developing and testing new treatments. In addition, a set of six poems were created from the groups’ transcripts, to capture the wide digital ulcer experience using the words of the people who kindly participated in the study. One has been reproduced below, and the others are available on the SRUK website.

A conceptual map comprising the five major inter-related themes that constitute the patient experience of SSc-DUs (1)

PHYSICAL SYMPTOMS AND SIGNS PAIN SENSITIVITY LOSS OF HAND FUNCTION

How we approached the problem We were very grateful to receive funding from the Scleroderma Clinical Trials Consortium (SCTC) to undertake this research. Members of our research team met with four groups of people around the UK who had been diagnosed with systemic sclerosis and had at some point experienced digital ulcers. The groups involved both men and women of different ages and ethnic backgrounds. The researchers asked questions to each group of participants, about their experiences and how the ulcers affected their lives. These questions had been put together by a panel of clinical experts and patient representatives. Five themes that encapsulated the experiences of the participants were identified, (see below), and presented in a peer-reviewed scientific journal article published in Arthritis Care and Research(1).

AGGRIVATING FACTORS

MITIGATING FACTORS

NUMBER OF ULCERS LOCATION OF ULCERS TIME TO HEAL RATE OF ULCER REOCURRANCE TRAUMA TEMPERATURE

EFFECTIVE TREATMENTS AIDS & DEVICES COPING STRATEGIES SELF MANAGEMENT ADAPTATIONS SUPPORT FROM OTHERS

PSYCHOLOGICAL IMPACTS FEAR ANXIETY EMBARRASSMENT LOW MOOD CONSTANT VIGILANTE VISUAL APPEARANCE

Disabling pain and hypersensitivity Participants reported that pain was one of the worst things about digital ulcers and many used quite graphic and emotive language to describe their pain (see the poem created below). People described how intense and disproportionate the pain was compared to the size of the ulcers, which were often no bigger than a fingertip. They described how it was often difficult for others, such as friends, family or doctors, to understand how excruciating the ulcers could be. They explained how changes in temperature, exposure to infection and ‘knocking’ the ulcer would aggravate the pain, and many described how the site of the ulcer remained painful even after it had healed.

FUNCTIONAL IMPACTS HAND FUNCTION SELF-GROOMING WORKING RELATIONSHIPS WITH OTHERS SOCIALISING HOBBIES SLEEP DISTURBANCE

Summary written by: Michael Hughes 1,2: 1. Centre for Musculoskeletal Research, Faculty of Biology, Medicine and Health, The University of Manchester, UK. 2. Department of Rheumatology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK. Jennifer Jones 3,4: 3. Musculoskeletal Research Unit, Translational Health Sciences, Bristol Medical School, Bristol, UK.

Deep and broad-ranging emotional impact People also talked about the emotional impact of ulcers. Many experienced anxiety, as they tried to avoid anything that would aggravate their ulcer, including work or family activities, such as playing with their children. There was uncertainty about where and when the next ulcer would appear, how severe it would be and how long it would take to heal. This constant vigilance could lead to feelings of anger, fear and frustration. Some participants also talked about being embarrassed about the appearance of ulcers and trying to conceal them with bandages or gloves, which also protected these areas from knocks.

4. Health Sciences Department, University of Leicester, Leicester, UK. Andrew Moore 3: 3. Musculoskeletal Research Unit, Translational Health Sciences, Bristol Medical School, Bristol, UK.

Study team Michael Hughes BSc (Hons) MSc MBBS MRCP (UK) (Rheumatology) PhD, John D Pauling BMedSci BMBS PhD FRCP, Jennifer Jones PhD, Christopher P Denton PhD FRCP, Robyn T Domsic MD MPH, Tracy M Frech MD MS, Ariane L Herrick MD FRCP, Dinesh Khanna MD MS, Marco Matucci-Cerinic FRCP FBSRhon, Lorraine McKenzie, Lesley Ann Sakettkoo MD MPH, Rachael Gooberman-Hill PhD, Andrew Moore BSc (Hons) PhD 1 Hughes M, Pauling JD, Jones J, Denton CP, Domsic RT, Frech TM, et al. A Multi-Centre Qualitative Study Exploring the Patient Experience of Digital Ulcers in Systemic Sclerosis. Arthritis Care & Research. 2019;doi: 10.1002/acr.24127. [Epub ahead of print].

This poem captures the thoughts and feelings of some of the people who participated in the study

Raynaud’s Awareness Month: Highlights of the month February was Raynaud’s Awareness Month and our message was simple – Know Raynaud’s. Our aim was to raise awareness across the UK and reach the 10 million people who are estimated to have Raynaud’s. Our message urged people to take our online test and read our information so that they would know the symptoms and how to manage them, know the risks and how SRUK can help.

THANK YOU We asked our community to get involved and you were great – thank you to everyone that helped us spread the word by displaying posters and distributing information locally, sharing your story, fundraising and sharing our social media posts. Nearly 20,000 people took the online test – which is great considering some of the challenges in the wider news arena, including Storm Dennis and the ever-developing Coronavirus situation. Here is a summary of the activity and some of the highlights:

In the media and online The Times and The Mirror featured coverage on Raynaud’s and The i newspaper featured Gillian McNay’s story: We had prominent pieces on various online health websites including expert blogs on the BUPA and Aspen healthcare websites – two brand new outlets for our information; as well as Patient, Good to Know and Woman and Home, amongst others.

In the community In the community we had a piece in the Rowlands Pharmacy customer magazine that went out to their 510 stores. Our community were also out and about distributing leaflets and flyers. We had over 1,000 leaflets and flyers out there, which were effective as we had calls from people saying they had seen them, and that it had prompted them to get in touch.

Fundraising We had coverage of our Cosy up with a Coffee initiative in the local press and there were nine events organised. Siobhan Hollis broke her own fundraising record, raising £500. Her daughter, Sophie, excelled herself with another SRUK-themed showstopper and even those that couldn’t come gave a donation!

Date for your diaries Thanks again to everyone that got involved – you can also help us in June. June is Scleroderma Awareness Month – again we want to hear from you and need your help to get the word out and about.

Coronavirus appeal to our community

Juvenile scleroderma

The Coronavirus pandemic has changed so many aspects of our everyday lives, but what hasn’t changed is our commitment to our community.

Children who are diagnosed with scleroderma are more likely to be affected by a milder form of the condition, with localised scleroderma occurring far more commonly in children than systemic sclerosis.

• During March, we received a threefold increase in the volume of calls to our Helpline and to the SRUK office • We have received three times as many calls and emails to our information service • In March, over 6,740 people visited our social media platforms • We have joined forces with the Rare Disease Alliance to lobby for more information that is relevant to our community • We have worked with hospitals and consultants to obtain more information and clarity about your levels of risk and the steps that you can take to help protect yourselves during this time We want to ensure that we are here for you; that we continue to answer your calls to the Helpline and keep our information updated, and that we continue to fund vital research into the causes and treatments “Thank you for the of these conditions. advice regarding

COVID-19, it has put my mind at rest… Keep up the good work” Lynda

Juvenile localised scleroderma affects the skin and accounts for over 90% of all cases. It is not thought to overlap with systemic sclerosis, which can also affect the internal organs and is extremely rare. As with many autoimmune conditions, scleroderma is more prevalent in girls and although it can happen at any age, symptoms often become apparent by the age of nine.

Types of localised scleroderma Morphoea “Excellent information/ clarification, thank you” Paul

Eliza and Eleanor

Whilst our immediate priority is getting through the current Coronavirus crisis, we are still focused on our long-term mission to invest in improving treatment options, diagnosis and quality of life, and we are still striving towards finding a cure.

You can help us to continue to be here right now and to keep on investing in the future.

Morphoea is the most common form of juvenile scleroderma, presenting as irregular patches of thickened skin. In the beginning these often appear small and pink, and because many minor skin ailments present in a similar way, children may be prescribed topical creams in the first instance before being referred for investigations. The patches will eventually harden, turning white and then brown. In many cases the affected skin will soften over time, and there may be no longterm complications.

Linear scleroderma

This presents as lines of tight and shiny skin, often appearing on an arm or a leg and extending towards the hands or feet. It may also affect the underlying muscle, fat and bone, resulting in the appearance of scarring. Children with linear scleroderma will often have a positive outlook. The condition may however affect their normal growth, especially if the affected skin crosses over a joint. Early diagnosis and prompt treatment will help to minimise any longer-term complications.

Linear scleroderma en coup de sabre

Please donate via our website: sruk.co.uk/donate

This form of scleroderma presents on the face and sometimes the scalp. It usually appears as an indented, vertical line on the skin of the forehead, and for many children the problem will be mainly a cosmetic issue.

Alternatively, please call us on 020 3893 5998, or send a cheque (made payable to Scleroderma and Raynaud’s UK) to 18-20 Bride Lane, London, EC4Y 8EE* • £10 could provide a lifeline to someone who needs it, by making sure our trained Helpline volunteers are there to answer their call • £15 could help us to fund vital everyday research equipment that our scientists need to continue their work

Thank you for all your support

“I’ve learned more about my condition on your site in a few minutes than I ever had explained to me…. many thanks” Margaret

Parry Romberg’s syndrome This is similar to coup de sabre but may affect an entire side of the child’s face and sometimes the tongue. As ever, early diagnosis is crucial since there may be additional complications if the normal growth of the facial bones is affected. It is also known as Progressive Hemifacial Atrophy, or HFA.

“I first noticed my daughter’s symptoms shortly after her third birthday. She was repeatedly misdiagnosed as having a fungal skin infection; it took 15 months to eventually reach the correct diagnosis. As we continue to raise awareness of juvenile localised scleroderma, hopefully diagnosis rates will improve.” Alison, mum to Eliza, 10 and Eleanor, 7, who have localised scleroderma

*There are currently delays in receiving our post, so please do bear with us as your donation may take longer to process

Juvenile systemic sclerosis

Stress, anxiety and scleroderma

Juvenile systemic sclerosis is an extremely rare, long-term health condition that may progress over time, although the prognosis is generally far better for affected children than adults.

Everyday stresses are known to trigger flare-ups of various autoimmune conditions regardless of age, and scleroderma seems to be no exception.

It is usually characterised by Raynaud’s phenomenon and thickened skin, and may also affect the internal organs, such as the heart and the lungs. Every case is different, so the plan for treatment and management will depend on how an individual child is affected.

For many teenagers with scleroderma, there appears to be a connection between emotional and physical wellbeing, as several young people and their families have noticed a relationship between stress or anxiety and disease activity.

What causes juvenile scleroderma? The cause of juvenile scleroderma is not known. No clear inheritance pattern has been identified, although we do know of multiple cases occurring within the same family; and there may sometimes be a link to family history of other autoimmune conditions. What we do know is that more research is needed to determine the true extent of the relationship between genetics and developing scleroderma.

Treatment Treatment options will vary depending on the situation, for example medication to dilate the blood vessels may help to alleviate Raynaud’s attacks. Small patches of thickened skin on the trunk of the body may require no medical treatment at all, or topical creams or ointments may be helpful in some cases. Larger skin lesions or those appearing over the joints or on the face with the risk of permanent damage may require drug treatment, with medications such as Methotrexate shown to be effective in many cases. This may be combined with steroids if necessary, or if the inflammatory markers are raised. Many children will also be referred to a physiotherapist to help maintain movement within the joints and the skin.

Growing up with juvenile scleroderma Early diagnosis is crucial, so that the disease can be monitored and the right treatment given, with a view to reducing the symptoms and limiting any long-term damage. We are aware however that some families have had to wait longer than others to receive an accurate diagnosis. Since every case is different, there could be a number of reasons for this; however we will continue to raise awareness of Raynaud’s and scleroderma, with the aim of improving diagnosis rates for everyone.

“It has been really tough, especially with other people’s ignorance of these conditions but more so “Since I was due to the fact of not having a full diagnosis. We so young, it was will keep fighting!” Lisa caught very early, which was such a good Drug therapies can be of great benefit; however they also carry certain side effects. Although these will be weighed up against the potential thing. I am really lucky benefits when medications are prescribed, the side effects may still that I got a quick have a considerable impact upon how your child is feeling, and it is important to mention this to your doctor, as they may have some diagnosis” Lauren suggestions to make life easier.

Having juvenile scleroderma means living with a long-term health condition. Because scleroderma literally means ‘hard skin,’ it is characterised by skin involvement for many young people. Although the medical outlook is generally good, the cosmetic aspects of this can be significant, and for some children the psychological impact of living with scleroderma can be one of the greatest challenges. When a child’s appearance is affected by scleroderma this can have a serious impact upon their selfconfidence. Young people and especially girls have told us, for example, that they feel they have lost the appearance of their lips, or that their skin is tight and shiny; and that these are things they can never change. This can severely affect self-confidence and lead to feelings of anxiety and depression, all of which are occurring against the pressures and emotional challenges of growing up that they already have to face in our ever-changing world.

“In my opinion, there is a definite correlation between stress and anxiety and disease activity in juvenile localised scleroderma.”

A great deal of growing up naturally occurs during the teenage years, with academic pressures and exam stress, as well as fluctuating social dynamics. It appears that sometimes, during particularly stressful times, symptoms may become worse. Although Alison it may not be possible to make the stress go away, such as during exam times, schools should be able to offer additional support to children who need it. Talk to your doctor or nurse specialist about the effects of the stress that your child is facing, as they may be able to help. Your GP can also make a referral to a counsellor if this could be of benefit.

Living with any autoimmune condition can be a challenge in itself, which can impact upon the whole family. Parents and caregivers have to miss work to attend appointments, as well as making all the necessary adjustments to family life. Children face missing school and other activities as their condition dictates; and may feel that they are growing up differently to some of their peers.

“Flare-ups happen a lot more since I’ve grown up and I’ve noticed that stress and anxiety (which come hand-in-hand with chronic illness) have a huge impact.” Lauren All of this means that for many children and young people with juvenile scleroderma, the effects are more far-reaching than a simple cycle of medical diagnosis and treatment. It is essential that the right support is available for affected children and families in dealing with every aspect of living with this condition. For more information on finding support for you and your child, please talk to your doctor or nurse specialist; and remember that help is always available via our Helpline, online community and social media platforms.

Juvenile Raynaud’s at a glance • Primary Raynaud’s is a common condition among children and young people. • In most cases, it presents as an extreme reaction to temperature changes and sometimes stress, affecting mainly the hands and feet. • Raynaud’s often presents around the time of puberty. It is more common in teenage girls and occurs less frequently in very young children. • Primary Raynaud’s can often be managed by keeping children warm and, (as far as possible), avoiding any sudden changes in temperature. • Raynaud’s is usually mild with no major complications; however, it is important to rule out any underlying causes such as scleroderma. Secondary Raynaud’s may be linked to damage to blood vessels that is caused by another autoimmune disorder, although this is far less common in children than in adults.

With special thanks to the members of our community who shared their experiences in this article.

Support & Useful Contacts

Fundraising - Review of the year

Our SRUK Helpline is available to anyone who is affected by the conditions to receive support.

0800 311 2756

The Helpline operates 365 days a year from 9am-7pm. This service does get busy so if the call goes to voicemail please leave your name and number and you will receive a call back within 24 hours. We have nine volunteers who man the helpline on a rota basis; Amelia, Brigid, Jean, Katherine, Kim, Liz, Pam, Karen and Susie. Our volunteers update their skills regularly and having external accreditation, as a member of The Helpline Partnership, means that we conform to their standards of excellence.

If you call the Helpline, the volunteer that you talk to may have scleroderma and/or Raynaud’s but as we know, everyone is different and the manifestations from person to person are varied and complex. Therefore, we refrain from swapping backgrounds and symptoms but listen positively to your issues and try to help you with your particular enquiry.

We are so lucky at SRUK to have such a dedicated community, your support and loyalty are the core of all we do. Across the community you have helped in various ways by sharing our social media posts, supporting each other, fundraising, donating and sharing your stories. We can’t continue without you so thank you and keep doing what you do best! During these times we are starting to think about different ways of doing things and with several events being cancelled we have put together some ideas about ways that you can use this time of social distancing and self isolation to challenge yourself and gather together the community around you. If you would like more details about this then please contact our friendly team.

Here are some of your highlights from a busy financial year!

Insilico partnership

Specialist Nurses Rheumatology Telephone Advice Line

01225 428823

Leeds

Specialist Nurse Team

0113 392 4444

Liverpool

Jan Lamb & Jenny Fletcher

0151 529 3034

Manchester

Specialist Nurse Team

0161 206 0192

Newcastle Upon Tyne

Karen Walker

0191 223 1503

Portsmouth

Julie Ingall

0239 228 6935

Royal Brompton

Lucy Pigram

020 7352 8121 (Main Switchboard)

Royal Free, London

Sally Reddecliffe & Adele Gallimore (For Pulmonary Hypertension Enquiries)

020 7472 6354

Royal Free, London

Specialist Nurse Team

020 7830 2326

Sheffield

Specialist Nurse Team

0114 271 3086

We secured £250k of pro-bono support as the Longevity Forum’s Science Partner in 2019. We worked with Insilico (a biotechnology company) to identify novel compounds and look for already licensed drugs for other diseases that can be repurposed for scleroderma.

The Longevity Forum This is a not-for-profit initiative committed to achieving longer, healthier and more fulfilled lives for as many people as possible. The project made some key breakthroughs to take forward for further study.

Events fundraisers

We are working towards providing contacts at key hospitals in Wales, Ireland and Scotland so please check the website for up to date information or call the Rheumatology telephone advice line (emboldened in green, listed above) with your medical query.

Local Support Contacts Our local support contacts provide support on a local level by organising support group meetings or by being available to local residents via the phone or email. If you are interested in joining one of our local groups or wish to receive some support then please contact us and we will be happy to put you in touch with your local support contact: 020 3893 5998 Local Support Contacts Bedfordshire

Rita Boulton

Exeter

Mike Corbett

Hampshire

Tracey James

Scottish Highlands

Lorraine Jack

Edinburgh

Anne Hogan

Norfolk

Lucy Reeve

South London

Celia Bhinda

Amersham

Marilyn York

Leeds

Chris O’Hora

Worcestershire

Shirley Lynch

Birmingham

Avtar Gill

raised over £115,000.

We have had so many people taking on events from marathons to making cakes. We have shared many of those stories throughout the year and want to say a big thank you to all those fundraisers – collectively you have

Christmas campaign You have supported us throughout the year and this was no exception when we launched our Christmas campaign – you donated over £7,200 altogether – we are so grateful to you all for giving generously and also to Philip, Isla and Amanda who shared their stories for the campaign.

Facebook fundraisers So many of you have generously shared your special occasions with us, asking for donations rather than gifts. The majority of those have done this through Facebook fundraising and you have collectively raised over £15,000. Congratulations, many happy returns, happy birthday, anniversary to everyone!!

Legacy gifts Our members have been so generous with their legacy gifts over the years and their legacy has been to ensure we can continue to invest in research, support and information for years to come.

Fundraising Thanks

Unfortunately, due to the coronavirus pandemic, many events have been postponed but we still want to say a big thank you to those that fundraised and trained so hard. Running

Recently we were sad to hear of the death of long term member Brenda Cooper. She generously left us £5,000 as a gift in her Will. She is greatly missed by her husband Brian, who told us:

London Marathon – our team of nine runners had all trained really hard and had collectively raised over £12,340. They will have to wait until 4 October for the actual event but in the meantime, they are continuing to train, running their own solo local marathons and fundraising in preparation.

“Brenda was a great supporter of the charity and found your services and support extremely beneficial over the years. We are also very grateful for her medical treatment at The Royal National Hospital for Rheumatic Diseases in Bath.“

London Landmarks team

Our team of nine had raised over £3,700 before the event was cancelled – currently there hasn’t been a new date set but some of our runners are doing a local run like Sarah Haddock, who did her own solo local landmarks half marathon, beating her PB time and raising £500.

In memory giving It’s such a special gesture to think of SRUK at a time of loss and so many people have collected money at funerals, run events in memory of loved ones and just generally celebrated the memory of those we’ve lost by doing something special for SRUK. Collectively we have received £60,000 from our in memory supporters.

Alan Hall

Volunteers

Alan had got through four of his 20 half marathons in 2020 for SRUK before event cancellations stopped him in his tracks. He will persevere though and is looking into his options, perhaps even doing some local solo runs.

Walking

Sue Edser and her nephew Lee Adams were all set for their 182-mile Coast to Coast walk – they will still be raring to go when it’s back on and have so far raised over £1,250 - brilliant effort.

Our Helpline volunteers and support group volunteers are giving their time generously to ensure they can offer support, a listening ear, a sympathetic shoulder and further information. These periods of self-isolation and social distancing have been felt across the country, but we know that you can feel like that all year round when you have a rare disease that few people understand.

Carissa Gill was going to be taking on the Everest Base Camp trek in memory of her grandma who died of scleroderma. Along with her mum Darsha and Heena, Graeme and Lucy. Their fundraising target is £1,000 and they are all hoping that they reach that, as well as the summit, very soon!

Online community It is fantastic that so many of our online groups are a source of information and support and that people are so willing to share their experiences and stories to help others.

Members

Sarah Haddock

In memory

Philip Beckett has had a busy 2020 so far; continuing his fundraising efforts in memory of his daughter, Lauren. In February, his quiz night raised £1,200 and his bucket collection at Tesco raised £204. He also had a team lined up for the Norwich Half Marathon – now postponed until 25 October – which will give him time to sign up even more members! So far Philip has raised over £37,000 of his £50k target!

The majority of you have been members for many years – thank you for your loyalty and continued support. This is your magazine so please do let us know what you would like to see in here, what are the stories you want to read, would you like to share your story, do you have questions you would like answered?

Talk to our team – we are here for you. If you would like to get involved in any future events or organise your own fundraising then contact our team on

Talk to the team – call 020 3893 5998, email: info@sruk.co.uk 25

Lauren Beckett

020 3893 5993 / fundraising@sruk.co.uk/ sruk.co.uk/get-involved

Ways to support us Firstly, we would like to say thank you. By receiving this newsletter you are helping us to continue our vital work to make a difference to the lives of people affected by scleroderma and Raynaud’s. We could not achieve as much as we do without you and we are always striving to achieve more. If you have an idea as to how SRUK can further support the community then we would love to hear from you.

Your Magazine, Your Way Thanks to everyone who provided feedback on the last issue of the magazine, as this is really important to us. If you have a comment or suggestion for a story you think we should cover then call our team on 020 3893 5998 or email: info@sruk.co.uk

Donate to us through our website www.sruk.co.uk by clicking the donate button or by phoning our friendly team on 020 3893 5998 using your debit/credit card.

Scleroderma & Raynaud’s UK Bride House, 18 - 20 Bride Lane, London, EC4Y 8EE We hope you enjoyed your edition of the SRUK magazine. If you have finished with your copy then please do pass it on to a friend or your local GP surgery. Alternatively pop it into your recycling and help us look after our planet.

www.sruk.co.uk Helpline: 0800 311 2756 Office: 020 3893 5998 @WeAreSRUK

/WeAreSRUK