SRUK News Spring 2021 by Scleroderma & Raynaud's UK

Issue 21 Spring Edition 2021

SRUK NEWS Dannii Levi inspired over 50 supporters to run 28 miles in February, raising over £400 for SRUK! Read her incredible story inside

Systemic SclerosisAssociated Pulmonary Arterial Hypertension: Detection, Diagnosis and Beyond

Raynaud’s Awareness Month 2021 Full campaign coverage inside!

Coming soon: Our first-ever Virtual Conference! Find out more and register today

“Ireland did not have a Support Group for people living with scleroderma, and I wanted to change that.” The inspiring story of the SRUK Support Group in Northern Ireland

Services Directory

Welcome

SERVICES DIRECTORY

WELCOME TO THE LATEST EDITION OF SRUK NEWS

Scleroderma & Raynaud’s UK is the only charity dedicated to improving the lives of people affected by Scleroderma and Raynaud’s. We exist to improve awareness and understanding of these conditions, to support those affected, and ultimately to find a cure.

Dear Supporters

Social Media Join together and support each other through social media. Start a discussion, share tips and read advice from others on our Facebook, Twitter and Instagram pages.

Helpline: 0800 311 2756 Our free Helpline is open from 9am-7pm, 365 days a year, and our amazing volunteers have all been affected by Scleroderma and Raynaud’s. We are an accredited member of the Helplines Partnership and always conform to their standards of excellence.

Keep in Touch Support Service The Keep in Touch Support Service is a telephone-based service designed to provide a little extra support during times like these. You can receive a regular call from one of our volunteers and talk about anything you like, for as long as this situation goes on. If you or someone you care for would like some more information, please contact us.

Events Update The SRUK team and all our incredible volunteers and fundraisers are very much looking forward to the return of face-to-face and mass participation events. As we adjust to our ‘new normal,’ we have countless ways to get involved. To reach the fundraising team, please email fundraising@sruk.co.uk or visit us at sruk.co.uk/get-involved/events/

Local Support Groups Our local Support Groups are still as active as ever and are working hard to keep people connected at a local level. If you are interested in joining a group or you would like to find out more, please call us or send us an email, and we will be happy to put you in touch with your local support contact. Please turn to page 20 to read about the group in Northern Ireland.

Our Online Community Help and support is also provided via our online forum hosted on Health Unlocked. This is a friendly space where you can exchange advice, information and support with others, 24-hours-a-day, seven days a week. Many of our community members are living with these conditions themselves, although friends, family and partners are also very welcome. Please visit healthunlocked.com/sruk 2

For more information, please call O20 3893 5998 or email info@sruk.co.uk

The longer evenings and warmer weather are certainly bringing some cheer after quite a tough winter. Whilst for many the vaccine has brought a degree of confidence, for people with a compromised immune system, there remain questions about the efficacy of the vaccines, which is why we will continue to be across the latest research and bring you the most current information. Please do call, email or get in touch with the Helpline if you have any queries or you simply want a chat. Our amazing volunteers are always here to help you and in this edition of the magazine we hear from Una Gillespie, who set up the Support Group in Northern Ireland. Una says that it was when she attended an SRUK Conference that she first realised there were treatments available to patients in England that didn’t appear to be available in Northern Ireland. Equality of access to the best treatment and care is something that SRUK along with other rare auto-immune charities are campaigning for and later this year, with your help, we will be launching a campaign calling for the introduction of Quality Standards to give us parity with other rheumatic diseases. This year I’m pleased to announce that there will be an SRUK Virtual Conference in September. Unfortunately, we still don’t think the time is right for a face-to-face event,

but we hope that this online platform will provide you with the opportunity to ask leading clinicians and researchers questions in real time, connect with others in the community, interact with our exhibitors and relax in our health & wellbeing zone. Please turn to page 22 to find out more. Despite some delays to our research programme due to COVID, our researchers are back up and running and we’re delighted to announce the award of grants to two multidisciplinary teams who will develop new skin assessment tools, which could be of benefit in both diagnosis and precision medicine. Please see page 9 for more information. Building capacity in the research community is vital and The Medical Research Council agreed to jointly fund a Clinical Research Training Fellowship. We received three good quality applications and we hope to announce the successful candidates very soon.

Contents 4. Doc Spot: your medical questions answered 7.

28 Miles in 28 Days For SRUK: Dannii’s Story

Research Update: Collaboration is Key

10. Research Update: The CRISTAL Index 11. SRUK Shop 14. Self Care: Systemic sclerosis-associated pulmonary arterial hypertension 17. Your Stories: Living With SSc-PAH 20. The SRUK Support Group in Northern Ireland 22. Our Virtual Conference 23. Raynaud’s Awareness Month 2021 25. How a Legacy Can Help 26. Fundraising Heroes

I want to thank you all for your continued support, which is very much appreciated and more important than ever. Please take care and keep safe. Very best wishes,

Sue 3

Your medical questions answered

DOC SPOT YOUR MEDICAL QUESTIONS ANSWERED BY PROF. DENTON OF THE ROYAL FREE HOSPITAL, LONDON

Doc Spot

How is scleroderma linked to high cholesterol, and will my condition make it harder to bring this under control? Is anything recommended to help SSc patients please? I have now developed raised cholesterol, which my GP thinks is connected to the scleroderma.

I have had Raynaud’s since childhood and I am now getting frequent joint pain and stiffness, especially in my hips and knees. It is now starting to affect my hands, which alongside the Raynaud’s is not good, especially when I have to drive.

There is not a direct link between cholesterol and scleroderma, but elevated blood cholesterol is very common in the general population and may require treatment with diet or drugs. In addition, some medications used in rheumatology (e.g., steroids or tocilizumab), can increase blood lipid levels. Cholesterol elevation should be treated in-line with cardiovascular risk and your GP can advise about this. It is notable that some drugs for high cholesterol such as atorvastatin have been reported to help Raynaud’s and digital ulcers in scleroderma although more research is needed. Having a diagnosis of scleroderma should not affect the treatment of elevated cholesterol.

Chilblains (also called perniosis) are Raynaud’s is very common in the general A common and result from blood vessel population, especially in women, and damage after cold exposure leading to itchy, usually first develops in childhood or early adult painful lumps, usually on the hands or feet. life. Most people will have primary They can associate with Raynaud’s. Raynaud’s, but it can sometimes They have been highlighted recently precede the development of as a frequent complication of other medical conditions, “some drugs for previous COVID-19 infection. In especially rheumatic high cholesterol such all situations, prevention is the disorders, including best approach by avoiding as atorvastatin have systemic sclerosis. Joint cold exposure, but local pains and stiffness are also been reported to help creams or ointments are common and may not Raynaud’s and digital sometimes helpful, including indicate any serious ulcers in scleroderma steroid preparations. medical condition but although more research Sometimes, for severe cases, should be investigated if is needed.” systemic treatments are used they affect everyday activity. such as low-dose aspirin, Formal assessment in a hydroxychloroquine or short hospital with an antinuclear courses of prednisolone, a steroid antibody screen (ANA) and nailfold tablet. You should discuss this with your capillaroscopy can identify secondary doctor if necessary. Raynaud’s at an early stage and you should discuss this with your doctor as referral may be appropriate. I would like to know the reasons for

I have quite severe Raynaud’s symptoms and on several occasions I have experienced an intense burning sensation on my tongue, which has then become quite numb. It is very uncomfortable and quite distressing. I think this could be ‘burning mouth syndrome.’ Could it be connected to my Raynaud’s, and is there anything that might help?

Raynaud’s phenomenon causes A disturbed blood flow in the extremities triggered by cold or emotional stress and is associated with spasm of blood vessels. Other parts of the body can be affected, including the tongue, ears and nose. Numbness can associate with the phase of blood vessel spasm and burning discomfort is a feature of the blood returning after an attack. Treatments that benefit more typical Raynaud’s by reducing blood vessel spasm may be helpful. 4

Could this mean I have secondary Raynaud’s and possibly developing more problems?

remain affected even after several years, although sometimes they can eventually return almost to normal. Do you have any advice on how to deal with chilblains? I am wearing thermals but these do not seem to be bringing any relief. Thanks in advance.

I have SSc and morphoea, and I have now been told that I have eosinophilic fasciitis. It affects the skin on my lower arms, and I am very conscious of this as it is extremely visible. Is this just another part of the morphoea and is it likely to progress? Can the areas eventually go back to normal?

Eosinophilic fasciitis is a medical condition leading to inflammation of the fatty tissue under the skin. It is rare and the cause is unknown. It shares features with scleroderma, especially forms of deep morphoea and some patients with fasciitis later develop morphoea in the overlying skin, and conversely some cases of established morphoea may develop associated fasciitis. For this reason, fasciitis is regarded as one of the scleroderma-like diseases. Fasciitis usually affects the extremities of the limbs and can be treated with steroids and immune suppression. Generally, the condition stabilises and improves with treatment, but tissues may

unexplained weight gain in systemic sclerosis and any possible options that may help to avoid/reverse this really debilitating anomaly of the disease. This is a real issue for many people whose mental health and selfesteem are being affected by this.

Possible explanations for gaining weight in systemic sclerosis include necessarily reduced levels of physical activity due to the disease, and also the general impact on lifestyle and mood that may alter eating habits, and lead to increased food intake. Other medical causes include associated conditions such as low thyroid activity. If weight gain is associated with fluid retention, that can also be an important sign that needs further investigation of heart and kidney function. However, more frequently poor nutrition and weight loss are more of a medical concern, and this also needs to be assessed. For all of these reasons it is important to monitor weight regularly if you have systemic sclerosis.

Doc Spot

Dannii’s Story

How effective is therapeutic plasma exchange (TPE) in the treatment of systemic sclerosis?

Plasma exchange is an advanced medical procedure that involves filtering blood cells in a machine and replacing the non-cellular part of the blood with donated plasma proteins. It is used for certain severe medical conditions affecting the blood, kidneys, or nervous system. There are some reports that this technique helps systemic sclerosis, but no convincing clinical trials have yet been performed. At present it cannot be recommended, and more research is probably required to test its superiority to other available treatments that are part of standard management.

“CHILBLAINS (ALSO CALLED PERNIOSIS) ARE COMMON AND RESULT FROM BLOOD VESSEL DAMAGE AFTER COLD EXPOSURE LEADING TO ITCHY, PAINFUL LUMPS, USUALLY ON THE HANDS OR FEET. THEY CAN ASSOCIATE WITH RAYNAUD’S.”

I am a 26-year-old female and I have just been diagnosed with Raynaud’s and started Nifedipine. Does this mean that I am at the same risk level as anyone else within my age group in relation to COVID-19, or am I at higher risk of complications from the virus?

Raynaud’s phenomenon is very common, especially in young women, and is usually primary Raynaud’s without associated disease. Nifedipine is a standard treatment that can reduce the frequency and severity of Raynaud’s attacks. It should not affect your risk of COVID-19 nor make the disease more severe if you catch it. Young women are one of the groups at lowest risk of severe illness from COVID-19, but you should still follow all guidance to minimise risk and help to protect others who may be much more vulnerable.

If you have a question you would like to ask Professor Denton, or you would like to comment on any of the answers given, please email

info@sruk.co.uk

You can also connect with us on Twitter, Instagram and Facebook. /WeAreSRUK

Dannii Levi, 40, challenged herself and inspired an army of supporters to run 28 miles during the 28 days of February 2021. They have now raised over £400 for SRUK.

28 MILES IN 28 DAYS FOR SRUK Dannii’s story Dannii lives with her partner in Northampton and has had Raynaud’s for most of her life, having had a sudden attack on her first birthday when she was taken to hospital. She started running just over four years ago and is an active member of her local running club. Her challenge of running 28 miles in 28 days for SRUK was conceived during a conversation with Michelle, her running coach. Around 50 people engaged with Dannii and Michelle by joining them virtually to complete this challenge; not only raising vital funds for SRUK but also increasing awareness of Raynaud’s and the symptoms to look out for.

As part of the Step Forward for Lewis challenge for Raynaud’s Awareness month, I set myself the goal of running 28 miles in 28 Days during February. This was my first-ever individual challenge, and it was promoted through the running club as well as via social media. At least 50 people have now signed up to take part, which included a donation to SRUK. Everyone received a medal upon completion. Living with Raynaud’s meant that I was fully aware that this wouldn’t be easy, but the winter had been quite mild, so it was not impossible. During Week One, I started with some interesting weather, not the worst I had run in but as the first week progressed it started out cold, then foggy and then it was really, really, cold. On the third run I could only manage 20 minutes as the wind was so chilly and I had as much of me covered up as possible. By the end of Week One I had covered nine miles.

During Week Two, we saw temperatures drop down to the minus figures. I drove to work on one of those days and I was losing the feeling in my toes one by one on the short drive, so after that I stayed home. I think I stayed in for four days, and eventually by the end of the week I managed a three-mile run. This brought me to 12 miles over two weeks. There was a part of me that was disappointed, but then I remembered this is what I wanted to raise awareness about: that I was a prisoner in my home, not because of COVID-19 but because the temperature was too cold for me due to my Raynaud’s. When this pandemic is over, many other people as well as me will still have to face this issue.

Dannii’s Story

During Week Three the temperatures increased, which is so typical of February. I was able to get out for runs again, still all wrapped up but with much better temperatures than the first two weeks and by the Sunday, I had reduced my running gear down to two layers and even let some air on my skin. I managed about 10 miles, so I finished Week Three on 22 miles. Week Four was the final week, and I managed to complete this challenge by Day 27. There was a spring in my step, especially on Saturday when I went to our local park. I hadn’t run that route in a while and I knew that by the end of this run my challenge would be complete, and the adrenaline actually got me through as it was one of my fastest winter runs ever. I’m also a runner that likes to sprint finish; but I can’t do this in the winter as the quick change in body temperature in comparison to the outside temperature causes a Raynaud’s attack, so I had to fight the urge to sprint and still managed my third-fastest run of this winter season.

Research

This year more than any other, I can truly say that the people around me are now more aware of Raynaud’s. Thank you to Jess and everyone at SRUK; I’ve loved taking part in this challenge, even though it really has been a challenge.

The awareness-raising has been more significant than ever: not only have my own running group been talking about Raynaud’s more, so have my friends. I have been directing people to the SRUK website as I have had many people say: “I think my mum has Raynaud’s…” etc.

I even recorded a podcast for Running Tales about being a Raynaud’s runner, so have enjoyed my 15 minutes of fame. You can listen at:

runningtales.podbean.com /e/danni-levi-the-thought-of-being-out-in-the-cold-terrifies-me/

COLLABORATION IS KEY:

DEVELOPING A NEW DIAGNOSTIC TOOL FOR SCLERODERMA SRUK has huge ambitions to improve lives through research. In what has been a challenging year, SRUK has pioneered an innovative approach to accelerate research within key research strategy areas, funding two projects which will develop new skin assessment tools which could be of benefit in both diagnosis and precision medicine. The modified Rodnan Skin Score (mRSS) is a measure of skin thickness commonly used to assess the skin in scleroderma and as an outcome measure in clinical trials to determine whether new therapies work. To obtain the mRSS, clinicians use callipers to take skin thickness readings across the body. This relies heavily upon clinical judgement, meaning that different readings can be obtained on the same patient by different doctors. Clinicians must therefore undergo extensive training in this technique. But what if a device which is easier to use and provides an objective measure of the skin could be developed to diagnose and monitor scleroderma? To realise this ambition SRUK hosted The Scleroderma Diagnosis Sandpit, a threeday event involving clinicians and scientists, to produce ideas for new, alternative devices to assess the skin. SRUK was not alone in this endeavour, having formed an innovative partnership with the Engineering and Physical Sciences Research Council (EPSRC)*. This partnership

The Sandpit

proved invaluable, from helping us identify the relevant engineers to invite, through to assisting with the assessment process and co-funding one of the projects awarded. Twenty-four clinicians and scientists from diverse backgrounds including engineering, computer and biomedical sciences attended. Participants formed teams to develop ideas with guidance from two individuals living with scleroderma. On the last day, teams presented their ideas to an expert panel, and it was decided whether to invite them to submit grant applications to SRUK for expert review and assessment by a ‘virtual’ panel in July 2020. Two projects were awarded funding in the region of £120,000. The EPSRC remained involved after The Sandpit, and even co-funded one of the projects. Team ‘SCIDEX,’ led by Dr Benjamin Almquist at Imperial College, will develop a novel wearable system for real-time skin monitoring. The device could provide doctors with information on how a patient is responding to treatment

“We are limited by current assessment tools such as the skin score, which is limited by subjectivity, as well as the time needed for training and standardisation. We need to make sure that new treatments are evaluated in the best and most robust way so that we can make more progress and discontinue approaches that do not work.” Prof. Chris Denton

and be used for early diagnosis of scleroderma. Team ‘Oasis,’ led by Professor Peter Worsley at the University of Southampton, will develop a new skin assessment technique by repurposing existing technologies already used in other conditions. The technique is initially intended to support clinical management, but could eventually be incorporated into a wearable device for patient self-monitoring. Fast-forward to the time of writing and like so many others over the past year, these exciting projects have been impacted by delays caused by COVID-19. We look forward to reporting on the development of these two innovative projects and their impact in scleroderma and possibly beyond.

*The Engineering and Physical Sciences Research Council (EPSRC) is the main funding body for engineering and physical sciences research in the UK. It seeks to address the scientific and technological challenges facing the nation through investing in research and scientific training.

Research

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THE CRISTAL INDEX

SRUK funding is playing a key role in improving how we determine the success of new treatments in clinical trials. These projects aim to better inform researchers of the impact of potential therapies, ultimately improving wellbeing and quality of life for people living with limited cutaneous scleroderma. COVID-19 has improved public knowledge of the clinical trials process that is necessary for the approval of new drugs. Within such trials, outcome measures and endpoints are fundamental for study design and in showing that the treatment is effective. ‘Our previous magazine article ‘What’s the Outcome? Measuring the effectiveness of new treatments in clinical trials’ introduced outcome measures as measurable, clinical changes in a patient occurring as a result of treatment. For example, the modified Rodnan Skin Score (mRSS) used to measure skin thickness is commonly used within trials for scleroderma. An ‘endpoint’ is the measured change seen in a chosen outcome measure at a specific point in time, e.g., the difference between pretreatment and post-treatment mRSS. This is essentially a snapshot of what is happening in the skin, although it may not always capture the full impact of a drug, since there could potentially be other benefits that are not obvious using mRSS. Consequently, there is now a focus on developing a more comprehensive endpoint. Two SRUK and World Scleroderma Foundationfunded projects are working on this, CRISS and CRISTAL – that are specifically designed according to the two main types of this condition. 10

The CRISS Index in dcSSc Diffuse cutaneous systemic sclerosis (dcSSc) usually affects the skin and in some cases the internal organs, leading to heart, lung and kidney complications. In 2016 an index designed to evaluate treatments for dcSSc was developed, named CRISS (Combined Response Index in SSc). CRISS has demonstrated its success in reflecting how patients feel and function, furthering treatment options by advancing phases two and three in clinical trials, meaning that the new therapy is tested on a large scale, in patients with dcSSc.

The CRISTAL Index in lcSSc Limited cutaneous systemic sclerosis (lcSSc) affects smaller areas of skin and sometimes the gastro-intestinal tract. Between 2000 and 2018, only four out of 97 scleroderma trials focused specifically on lcSSc, reducing opportunities for new treatments. This underrepresentation is probably due to the paucity of outcome measures for lcSSc, since lesser skin involvement compared to dcSSc shows fewer dramatic changes in mRSS.

Dr Khanna at the University of Michigan is therefore developing the ‘Combined Response Index for Scleroderma Trials Assessing Limited SSc’ (CRISTAL). This aims to achieve a similar impact within lcSSC as CRISS achieved for dcSSc. Patients are central to this exciting project, which will review known lcSSc-specific outcome measurers and its array of clinical symptoms. In addition to consulting with other clinical experts, patients will provide insight into their symptoms and the impact upon quality of life. This input will deliver the final index which it is hoped will then be validated in a clinical setting.

SRUK SHOP The SRUK Shop is always open, so please visit us at srukshop.co.uk to see our complete range. Our products have been specially selected to help keep you warm and comfortable, whatever the weather.

Silver Gloves These gloves are seam free, flexible and will allow you to operate your mobile device and visit a cash point without having to remove them. Made using 12% silver thread woven on the inside, they have light stretch for improved fit and have been designed to accommodate swollen fingers. Available in 8% or 12%. (NB 8% = silver, 12% = black). XS, S/M, L/XL

12% = £23.50 8% = £12.50

SRUK Face Mask Our re-usable face masks are machine washable. The covering is double-layered and made with a soft cotton lining for comfort and features elasticated ear loops. The outer layer is 95% polyester/5% spandex and the inner layer is 95% cotton/5% spandex. They are washable up to 30 degrees Celsius.

A composite index for lcSSc is essential to ensure new treatments are relevant to this neglected subgroup, and patients are not missing out on developing treatments. We hope that CRISTAL will help bring greater clarity to clinical trials in lcSSc.

One size

£5.50

Astec Self-Warming Insoles (cut to size) For Cold Feet These insulating insoles help keep your feet warm. You can add them to the insides of your shoes to insulate your feet from cold ground. They are thin and unobtrusive, incredibly lightweight, robust and durable.

£24.99

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12% Silver Socks These 12% silver socks minimise any heat loss from the body by actively reflecting 95% of the body’s energy back to the skin. Manufactured from fine combed cotton and natural silver, they have superior ultra-light stretch for improved fit and comfort, allowing complete freedom of movement. S (2-4)/ M (5-6.5)/ L (7-9)/ XL (10-11)

Available as short £12.99, and long £14.99 9% Silver Short Socks also available, £10.99

Silver Socks & Gloves

Cost

Qty

Size

Colour

8% Fingerless Gloves (S-M or L/XL)

£10.99

Grey

8% Gloves (XS or S-M or L/XL)

£12.50

Grey

12% Gloves (XS or S-M or L/XL)

£23.50

Black

9% Short Socks Pair (S or M or L or XL)

£10.99

Black

12% Short Socks Pair (S or M or L or XL)

£12.99

Black

12% Long Socks Pair (S or M or L or XL)

£14.99

Black

Other Products SRUK Face Mask

£5.50

Astec Self Warming Insoles (Cut to size) for cold feet

£24.99

MyCoal Hand Warmers

£4.99

MyCoal Hand Warmers Box

£37.99

MyCoal Foot Warmers

£5.49

One size fits all

MyCoal Foot Warmers Box

£43.99

£5.99

Fleece Fingerless Mittens for Cold Wrists

£5.99

Fleece Fingerless Mittens for Cold Wrists One pair of soft, fleece, fingerless mittens with built in hand warmer sachet pocket. The glove extends right along the wrist to give extra warmth, and the fingers removed to give full range of movement. Includes one pair of self-heating, disposable hand warmers.

Postage & Packing Costs

MyCoal Hand Warmers Once opened. the disposable heat packs are activated by gently shaking or squeezing and can then be placed in your pocket, mitten, or glove. Stay comfortable with up to seven hours of warmth. These come in a pack of four pairs. Not re-usable.

Postage and packing for single items

£2.99

Postage and packaging for multiple items

£1.00 extra for more than 3 items

Total Order Total cost of goods

£4.99

Postage & Packaging To include a donation please add here Total enclosed

MyCoal Foot Warmers Once opened, the disposable foot warmers or heat packs are activated by gently shaking or squeezing and can then be placed at the toe end of your shoe. They are shaped for comfort. The heat pads remain warm for up to seven hours, ideal for anyone who gets cold feet or has Raynaud’s. They then must be disposed of as they are not re-usable. They come in a pack of four pairs. Warm up your toes and feet with these warmers designed especially for those wintery days or cold nights, or if you are standing on cold ground for a long time.

£5.49

Name Address Postcode Telephone Email

MyCoal Hand or Foot Warmers Box Make a saving with this box of 40 pairs of hand or foot warmers.

Hand Warmers £37.99 Foot Warmers £43.99 12

FOR MORE PRODUCTS AND INFORMATION GO TO WWW.SRUKSHOP.CO.UK OR CALL 020 3893 5998

Please return to: Bride House, 18 – 20 Bride Lane, London EC4Y 8EE 13

Self Care: SSC-PAH

SYSTEMIC SCLEROSISASSOCIATED PULMONARY ARTERIAL HYPERTENSION

Systemic sclerosisassociated pulmonary arterial hypertension (SSC-PAH) occurs when fibrosis causes the walls of the pulmonary arteries to thicken, raising blood pressure in these critical vessels and placing additional strain upon the heart. Early signs include persistent breathlessness that may be so mild at first that you hardly notice it. If this sounds familiar, it is important to talk to your doctor. Pulmonary hypertension (PH) means high blood pressure within the pulmonary arteries, which are the main blood vessels that carry blood to the lungs from the heart. This can lead to damage to the right side of the heart, so that it cannot work properly. When the cause is narrowing of the small blood vessels this is called pulmonary arterial hypertension (PAH). Systemic sclerosisassociated pulmonary arterial hypertension (SSc-PAH) refers to inflammation and scarring within the blood vessels of the lungs. This may lead to the thickening of the walls of the pulmonary artery, to the extent that it can no longer open up 14

easily to relieve the pressure of the blood inside. If extensive, this may lead to a significant build-up of pressure in the vessels feeding into the lungs from the heart, so that blood pressure in the pulmonary artery is higher than normal. This affects the small blood vessels of the lungs, so that there is less blood reaching the lungs and less oxygen carried within the bloodstream. The high pressure then leads to a stretching of the right side of the heart, meaning that it has to work harder.

Around one-inten people with scleroderma may develop SSc-PAH. The reasons are unclear but much work is ongoing to try and understand this better.

other conditions that can occur more commonly in SSc. These include blood clots to the lung (pulmonary embolism), scarring of the lungs (pulmonary fibrosis) and stiffening of the heart. Referral and investigation by one of the specialist PH centres in the UK will help to determine the cause of the raised blood pressure in the lungs and identify the appropriate treatment.

Symptoms of SSc-PAH Symptoms are caused by either reduced oxygen levels in the bloodstream or by additional strain upon the heart that stops it from working efficiently. For some people, the onset of their condition is very slow, so if you do become aware of even very slight breathlessness, it is important to tell your doctor.

Detection and diagnosis Initial investigations will often be performed by your rheumatologist, but if there is concern or if further evaluation is needed you can be referred to one of the specialist PH centres in the UK. The initial investigations that you may have include all of the following: • Ultrasound of the heart (echocardiogram) • Breathing tests (pulmonary function tests) • Exercise tests • X-rays (including CT and MRI) Because there are effective treatments available for SSc-PAH, early detection is vital. Regular tests, including echocardiography (ultrasound of the heart), and breathing tests to assess your symptoms and monitor disease progression are an essential part of the management of systemic sclerosis, because these are designed to detect any changes early on. In many cases, the earlier these changes are diagnosed the better the outlook, because you can then be carefully monitored and offered treatment where necessary.

Routine, annual testing to assess your lung and heart function, as well as your blood pressure and kidney function, are therefore critical for detecting any problems, including the onset of SSc-PAH. You are entitled to have these tests regularly, so do not be afraid to ask your doctor if they are not being carried out.

Treatment There are a number of effective treatments available, although the best option for you as an individual will depend on several factors, including the nature and severity of your symptoms. There are some treatments that mainly concentrate on opening up the blood vessels (these are called vasodilators), and general treatments which aim to improve the symptoms.

General treatments may include: • Diuretics or water tablets: These remove excess fluid from the body to reduce the strain upon the heart. They also treat symptoms like swollen ankles. • Anticoagulation: Some forms of PAH carry an increased risk of developing blood clots, so anticoagulant medicines like warfarin can help to prevent this and enable blood to flow more freely. There are also certain specialist treatments for SSc-PAH that can help to relax the arteries in the lungs. They are designed to slow the progression of PAH and may even reverse some of the damage to the heart and lungs. Different treatments can be given in different ways: • Oral tablets: These can help to reduce the pressure in the pulmonary artery.

• Shortness of breath with minimal exertion • Tiredness

In many cases, SSc-PAH will not develop until many years after the onset of systemic sclerosis. The development of pulmonary hypertension may also be associated with

• Fatigue • Dizzy spells and collapse • Chest pain • Swelling in the ankles or legs

Self Care: SSc-PAH

• Inhaled treatments: These can help to open up the pulmonary artery, thereby reducing the pressure. • Subcutaneous or intravenous infusions: These continuous infusions either just below the skin or into a vein provide a steady supply of strong medication to open up the pulmonary artery and reduce the pressure. • Endothelin receptor antagonists – such as bosentan, ambrisentan and macitetan. • Phosphodiesterase 5 inhibitors – sildenafil and tadalafil. • Prostaglandins – epoprostenol, iloprost and treprostinil. • Soluble guanylate cyclase stimulators – such as riociguat. • Calcium channel blockers – nifedipine, diltiazem, nicardipine and amlodipine.

Future outlook How your condition will affect you depends on several factors, including the severity of your SSc-PAH and any other health conditions. In general, the outlook has improved in recent years, due mainly to the ongoing evolution of effective treatments. Your doctor is the best person to explain your individual diagnosis, the prognosis and the treatment options that may be available to you.

Your Stories

“High blood pressure in the lungs, also known as pulmonary hypertension (PH), can develop in scleroderma. There are a number of causes for this and these should be properly investigated which may mean attending a specialist PH unit. It is important to remember to have annual checks to look for this, as early detection is important and there are now many new treatments available that can help.” Dr Colin Church

Living well with PAH Living with this condition is likely to affect your daily activities to some degree. You may notice that you are becoming tired more easily, or you may become breathless when walking short distances or climbing the stairs. Pacing yourself and recognising when you need to slow down will help you to manage your symptoms and keep on living life to the fullest. Taking regular exercise within your comfort zone will not make your condition worse. In fact, you should remain as active as you can; for your emotional wellbeing as well as for your physical health. Even a very short walk can make a real difference. Try not to overdo it and risk becoming tired from over-exertion; sometimes a small amount every day is enough.

It may not always be easy, but it is vital to take steps to keep as healthy as possible. As well as the well-known benefits of boosting wellbeing, optimising your lifestyle may even help to stop or slow down the progression of your condition. Whilst a healthy diet is important, 90% of people living with scleroderma will have some form of gastro-intestinal tract involvement. This may have an impact on the foods that you can eat and digest comfortably, so it is important to know what you tolerate well. If you are struggling to have a varied diet or to maintain weight, you can ask for a referral to a dietitian for help and advice. We would like to thank Dr Colin Church of the Scottish Pulmonary Vascular Unit in Glasgow for his help and support in producing this article.

YOUR STORIES: LIVING WITH SSc-PAH Carol’s story Carol has systemic sclerosis, Raynaud’s, osteoarthritis, inflammatory arthritis and pulmonary arterial hypertension (PAH). She lives in Scotland with her husband, and they have two grown-up children. Carol was originally diagnosed with CREST in 2008, when her main symptoms were cold fingers with colour changes to the skin. At the time, she was told that it would most likely not progress to attack vital organs, so she did not really worry at this point. Carol was diagnosed with PAH five years ago, after a routine echocardiogram showed changes within the heart. This was also the first time that she ever heard the term “systemic sclerosis,” so it was a lot to take in. In the lead-up to her diagnosis, Carol spent four days as an in-patient having diagnostic tests, including heart catheterisation. She was told that she had SSc and PAH on the fourth day. She now uses oxygen at home.

Carol says: I find myself fortunate and I try not to think too hard on how life will pan out for me. My perspective on life is to do the things you enjoy and don’t sit around. There are often ways

around things. When we are not in lockdown, I still meet friends for a coffee but if I am having a bad day and I can’t get out then they will come to me. I still enjoy gardening and tending to my planters, and I am thankful that I never worried about these conditions when I was young. Everyday tasks like hanging up washing can be very hard if no-one is around, although since a complete medication change in 2020, I am able to carry out laundry to the line on my own. My husband has to go to the kitchen cupboards and to the oven for me as anything high-up or low-down is difficult. I would like to have the kitchen re-done and get an eye-level oven, as this will make things easier. Being positive is very important. For me, living with PAH means trying to still live your life. Do not try to hide away, especially if you are an oxygen user, the public can be cruel and hurtful with assumptions – ‘oh yes that’s COPD,’ because they don’t know about PAH or SSc. PAH does impact on my life, basically because I have to use oxygen 16 hours out of every 24. It is harder in the summertime because the oxygen bottles are heavy to

carry around and you want to be able to potter around in the fine weather instead of being shut indoors. Another aspect is social invitations, anything from a birthday party to a wedding has to be carefully thought out, with arrangements made for equipment to be installed at the venue if you stay overnight.

“I still enjoy gardening and tending to my planters, and I am thankful that I never worried about these conditions when I was young.” Carol

Sometimes you just want to stay at home and not bother. I have to think of my husband then I feel I should make an effort and I do enjoy meeting up with friends. Prior to being diagnosed with PAH I also enjoyed going to the theatre in Edinburgh but with the distance it now has to be an overnight stay, so again you feel it’s not just booking your theatre tickets, it’s also organising for equipment to be put in place at a suitable hotel.

Your Stories

But there can be ways around it. Before lockdown we had a family wedding and we booked into the same hotel as the reception and had the oxygen concentrator sent there. At the wedding, I just disappeared for half-an-hour at a time (to use the oxygen) and then I went back, so I didn’t miss out. At this stage I knew that I could do it. Always speak to your team and share any concerns; don’t bottle them up. Living with PAH does change your outlook on life. I think do the things that you wish to now; don’t leave things for another day as living with PAH you don’t know what tomorrow might bring. Be positive, don’t dwell on your diagnosis and be as active as you can. My tips on living with PAH are to find out more about different medications and the various ways that we can be affected by the condition, as everyone is different. Join group chats on social media which are very helpful with little bits of advice from people in similar situations. Do not Google the condition but join a PAH group and you will get advice from there. Not everyone who is diagnosed with PAH will have systemic sclerosis, so everyone’s story

Your Stories

really is different. One quite frightening time was last year, when my medication for PAH was changed in January 2020, but by June I was struggling. I attended the GP because of breathlessness but unfortunately no bloods were done, bearing in mind my blood haemoglobin (Hb) level was at nine in the January. I felt really alone at this point and was getting no answers, other than that it must be the new meds. I then telephoned my PAH team and told them that I was concerned about the breathing and that I just felt that something was not right. I was taken down to The Queen Elizabeth Hospital Glasgow where it was found that my Hb was down to 8.8, and I required two blood transfusions, two iron infusions and a total change of medication: I came back home a new woman. So, if you feel that things are not right, always speak to your team who are there to reassure and guide you.

Larraine’s story Larraine is living with limited systemic scleroderma, PAH, fibromyalgia, hypothyroidism, Sjorgens, Raynaud’s, osteoporosis and osteoarthritis.

She first experienced Raynaud’s symptoms at the age of 20, during the winter after her son was born. It took 20 years and four different doctors before Larraine was eventually diagnosed with Raynaud’s. She was also aware of fatigue and reflux, however blood tests never indicated anything. After asking for a referral, she saw a rheumatologist in 2000, who made a diagnosis of CREST.

Larraine says: If I can help anyone who is newly-diagnosed I want to, as this is the worst part. In 2002, I was diagnosed with breast cancer. At the time, the doctor mentioned that my lungs may be affected or ‘bothered’ by the radiotherapy, so when the breathlessness started, I just put it down to that. We were travelling to the US every year, and we became more aware of the breathlessness at the airports, when we were walking long distances to the departure gates, however because of what the doctor had said I still assumed it was an effect of the radiotherapy. On one occasion, our flight home was cancelled. I asked if

we could just get to mainland Europe, and there was a flight available, but we had just 30 minutes to reach the terminal. We got there, but I was so out of breath that I couldn’t speak; and my husband said afterwards that he thought we wouldn’t make it onto the flight as he thought that I was about to collapse. As the breathlessness seemed to be worsening, I was sent for a CT scan, an MRI and lung function tests, and I was diagnosed with PAH in around 2014. I am grateful that I was able to attend the Royal Hallamshire Hospital in Sheffield, which is a wonderful place to go as the staff trained in PAH are so positive. I did have a feeling and I had already looked it up. I went to the hospital the day before with an overnight bag. I ran for the bus and somehow got on, but I was so breathless that I couldn’t speak. It took the entire journey to recover. I then took a taxi to the hotel and then on to the hospital.

“If I can help anyone who is newlydiagnosed I want to, as this is the worst part.”

The tests were inconclusive so the doctor said to come back for more, and if these still did not show anything then I would have right heart catheterisation. I asked to have it all done at once, and this time my daughter came too. The tests showed borderline PAH and it all went from there. It explained what was going on and that it wasn’t due to the cancer: it felt like the missing piece of the jigsaw. My diagnosis has impacted greatly over the last 10 years. Housework I don’t do any more: my husband does it all so that I have the energy to socialise with friends. I do have a good social life, and this is mainly due to my husband doing things around the house so that I can save energy to go out or to spend time with friends. I could not manage without his help. I cannot plan ahead easily, and each day is different. Some days I am fine and some days I am wiped out. A shower can wipe me out. I have to stop halfway up the stairs to catch my breath. Luckily, I have very good friends, who realise that I am not as fit as I could be. If I

have to cancel on them at the last minute, they are fine. I also have a mobility scooter that I can use for short journeys, and this helps me with friends as I can ride at their pace. I have a seat for the shower, but I do not use it all the time. I cannot do what I used to do. I find that even the smallest activity exhausts me. The breathlessness even just climbing the stairs at home has me panting for breath at the top and having to stay where I am for 10-15 minutes before I can carry on. The impact of living with SSc and PAH has also changed my relationship with my husband into something very different. With PAH, you have to learn to live with it. Try not to dwell on the past and what you used to be able to do. You must go forwards, otherwise it can be a downward spiral. I don’t have a bucket list, but I do have an ambition to see all of my grandchildren into adulthood and into decent jobs. Hopefully, the way I am now, I will get there.

Larraine

Support Groups

KEEPING ERLIT* FOR IRELAND Una’s story

Support Groups

*“Keeping Erlit” is an Irish term that means ‘Keep it going,’ or ‘Keep at it!’

Amanda’s story

“I felt passionate about the fact that, at that time, Ireland did not have a support group for people living with scleroderma and I wanted to change that.” Una Gillespie first diagnosed as this is such a rare condition, and I did not know anyone else who had it. I started a social media group in Ireland to try to reach out to others, and most of these contacts are now part of the main Support Group.

Una Gillespie is 41. She lives in County Tyrone with her family. Una is the mother of four children, and was diagnosed with diffuse scleroderma in 2015, when she developed issues with her fingers and toes and a nail technician advised her to go to the doctor. “This disease can make you feel very isolated, and I had to be my own advocate in searching for treatments and in looking after my ulcers. I was finding that apart from the specialists, health professionals often don’t know enough about it. Through attending SRUK annual conferences I realised that there were treatments available to patients in England that do not appear to be available here in Northern Ireland. I felt very alone in my battle with scleroderma, and I knew that awareness needed to be raised in Northern Ireland as well as in the UK. I remember feeling very isolated when I was 20

I felt passionate about the fact that, at that time, Ireland did not have a support group for people living with scleroderma and I wanted to change that. I am pleased to say that with the support of SRUK we have set up the first Northern Ireland SRUK Support Group and so far, we have had over 70 people join us via Zoom. Through our Support Group we offer support and encouragement for people living with Scleroderma and Raynaud’s. We can discuss our various treatments and we work together with SRUK to raise the profile of the disease and help to ensure co-operation between medical authorities and highlight the need for government support. Scleroderma is incurable at present but with timely and proper support, life quality can be enhanced and life expectancy significantly extended. So, I will keep on advocating for equality of healthcare for all of us. The membership of our Support Group recently doubled in the course of two months. This is progress that I could not have imagined.”

Amanda McCrea is 36 and lives in County Tyrone in Northern Ireland. She was diagnosed with Raynaud’s, lupus and limited scleroderma after she developed symptoms in 2012. During 2012, I went to my GP with a rash on my face that wouldn’t go away. She asked me if my fingers ever went white and I said that they did, she explained that this was Raynaud’s and ran some blood tests. These came back positive for limited scleroderma (crest syndrome), and also for lupus. Having a rare disease like scleroderma is very isolating. Most people have never heard of it or know the damage it can do; it takes a lot of time to come to terms with the diagnosis. I joined a lot of Facebook pages about scleroderma, I searched them all for Northern Ireland, because it’s so rare and I hadn’t ever heard of it before and I genuinely thought that I may be the only person in Northern Ireland! That’s how I came across Una, I couldn’t believe we lived in the same county! It was like a prayer was answered, as I didn’t feel so alone. I sent her a message and poured out my feelings and fears and she understood perfectly. Una has done a lot of fundraising and raising awareness for SRUK, and it’s down to her that we have this Support Group. “We want to reach everyone in Ireland who has been diagnosed: I think it’s fair to say each member probably felt scared and alone at the point of diagnosis, just like we did. We want to offer support, hope, and the sharing of experiences.” Amanda McCrea

We want to reach everyone in Ireland who has been diagnosed: I think it’s fair to say each member probably felt scared and alone

at the point of diagnosis, just like we did. We want to offer support, hope, and the sharing of experiences. Our group is growing all the time. We have a Facebook page for members and also a very active WhatsApp group. The feeling of community that comes from it all is great; and members are in contact with each other on most days. We also hold monthly meetings via video to catch up with one another and to hear from expert speakers. Una has done an amazing job in setting up the Support Group, and Ollie Scott at SRUK has been so supportive and invaluable when it comes to getting us any information we need or answering any queries we may have. We have benefitted from expert speakers to help us manage these conditions; for example, (SRUK) recently arranged for a rheumatology nurse to join us and provide some information on managing Raynaud’s. Ollie is so warm and dedicated:- our wish is his command and it’s like he’s our genie! Una, Ollie and all of the members bring so much to our group, so that we never need to feel alone or misunderstood.

For more information on our Support Groups or to get involved, please email info@sruk.co.uk and we will be very happy to help you. 21

SRUK Virtual Conference 2021

Raynaud’s Awareness Month 2021

THANK YOU FOR SUPPORTING RAYNAUD’S AWARENESS MONTH Join us virtually on 11 September 2021 Scleroderma & Raynaud’s UK is delighted to invite you to join our 1st Virtual Conference that will take place on 11 September 2021. Our ground-breaking Virtual Conference is a unique opportunity to learn more about Scleroderma and Raynaud’s. For the first time, we have gathered expert speakers from across the world to talk about advances in treatments, tips for self-management, new research and so much more. This interactive conference experience will enable our community to ask leading healthcare professionals questions in real time, to connect with one another and with our exhibitors, and to relax in the health & wellbeing zone.

Register today Further information about the Virtual Conference, including how to register, can be accessed by visiting sruk.co.uk/find-support/ sruk-virtual-conference

For all enquiries, please call 020 3893 5998 or email info@sruk.co.uk

What can you expect? • Fully accessible virtual meeting viewable on mobile, tablet, laptop and desktop

• Secure online access to cuttingedge research, insights, debates and news

• Exceptional international speakers: keynote talks, oral presentations, break-out sessions

• Real-time access on day of event: presenters online for Q&A

• Pre-recorded presentations: videos available on SRUK YouTube channel

Every February our aim is to reach the 10 million people in the UK who have Raynaud’s. We raise awareness of the signs and symptoms of Raynaud’s, encourage people to visit the SRUK website to learn about the condition, and take our online test. We want those that have Raynaud’s, to know more about the support SRUK can offer them and the help they can get to manage symptoms. We also want anyone who is living with Raynaud’s without a diagnosis or without knowing what it is, to take our online test and then find out more about it. We conducted a survey in January to measure levels of awareness and used this to drive our headline stories to the media. Despite Raynaud’s being as common as hayfever, the research showed that more than 24 million people - nearly one-in-two adults don’t know any of the signs of Raynaud’s – an astounding 24 million people.

COLD SNAP

• Downloadable resources

Do your hands get colder than other people's? You might have Raynaud's

D 22

We led a multimedia campaign across regional and national media as well as social media. We developed a range of national and regional press releases featuring SRUK supporters with Raynaud’s. We also issued a letter to editor to local newspapers across the UK calling on people to ‘Catch Up with a Coffee’ and donate to the charity. Alongside this we featured stories, quotes, video content and tips from our community on social media. Of course, there were challenges as COVID-19 and the vaccine roll-out dominated the news throughout February, however we did secure 70 pieces of media coverage, regionally and nationally spread across the UK.

Here are the highlights from the month: • Primetime interview on Sky News with CEO Sue Farrington and Steph Rolfe. Seen by 4.891 million people. This was also streamed live on Sky News’ YouTube channel, which has more than three million subscribers. • Securing a case studyled feature with Chat magazine which has a 526,000 readership, featuring Claire’s story. • BBC Radio Shropshire interview with our Head of Fundraising & Communications, which has an audience of 122,000 listeners. • Local and regional Scottish media coverage. • Understanding Raynaud’s Webinar – Dr John Pauling led this webinar and over 300 people registered – our most popular webinar to date.

HEALTH & BEAUTY • PARTNERSHIP

• Virtual exhibition: virtual booths, options to talk with exhibitors in real time or to schedule chats

• Virtual networking, communications, social events and more

With lockdown restrictions in place, we changed our usual fundraising campaign “Cosy up with a Coffee” to the virtual alternative “Catch up with a Coffee”.

o you know Raynaud’s? If you often experience cold hands, feet, fingers and toes, you could be one of the 10 million people in the UK affected by Raynaud’s Phenomenon. Raynaud’s is a chronic and incurable condition that may be linked to another, more serious autoimmune disease. You may not realise that you have Raynaud’s, however it is essential to find out; to help you control the symptoms and crucially, rule out any underlying causes. The latest research released by national charity Scleroderma & Raynaud’s UK highlights a shocking lack of awareness surrounding

A B S O L U T E LY m a g a z i n e s

Raynaud’s. It reveals that millions of people would simply dismiss their symptoms, with almost half of us failing to recognise them at all.

SIGNS AND SYMPTOMS

Symptoms are caused by changes in the extremities: usually the hands, feet, fingers and toes, often in response to cold temperatures or stressful situations. • Cold fingers and toes • Colour changes in the affected area to white, then blue and then red • Numbness, tingling or pain • Stinging or throbbing pain upon warming up When we are exposed to the cold, blood vessels become narrower. With Raynaud’s, this can be more extreme and blood flow is restricted,

causing noticeable colour changes to the skin: from white to blue and finally to red as the circulation returns. This is a Raynaud’s attack, which can be very painful. It is not just cold weather that could trigger an attack; sometimes just reaching into the fridge is all that it takes. There are two types of Raynaud’s. Primary Raynaud’s is the most common form that is not linked to any other health conditions. Secondary Raynaud’s accounts for around 10% of cases and will be associated with another autoimmune disease such as scleroderma, which may become serious and will require specialist care.

TAKE THE TEST

If you recognise these symptoms, we have developed a quick and easy online test that is available at sruk. co.uk/testme. Most people receive results within 60 seconds, along with information about what to do next. “I’ve always suffered with cold feet, hands and other extremities like my ears and nose, but because my sister had the same sort of symptoms, I thought it was just who we were. When I was younger, I would have to be really, really, really cold for my hands, feet, ears and nose to hurt. Now, it doesn’t take a lot for them to start hurting. If I don’t wear gloves it’s painful and I can’t grip stuff, but the bits that hurt the most are probably my nose and ears because I can cover everything else up.” Steph, 39. SCLERODERMA AND R AY N AU D Scleroderma and Raynaud’s UK is the only charity dedicated to improving the lives of people affected by Scleroderma and Raynaud’s. We exist to improve awareness and understanding of these conditions and to support those affected, and we fund research to ultimately find a cure. For more information or to find out what to do next, please visit sruk.co.uk, email info@sruk.co.uk or telephone 020 3893 5998.

Our Raynaud’s test can be shared all year round so please do keep the awareness going: sruk/testme 23

Raynaud’s Awareness Month 2021

How a Legacy Can Help

STORIES FROM THE COMMUNITY – THANK YOU TO EVERYONE THAT SHARED THEIR STORIES The majority of the coverage we secured focused on personal stories and the highest-performing social media posts were those with real stories and quotes. Showing how important it is that you keep sharing your stories and experiences; whether that’s just chatting to a friend or sharing via social media – we need those conversations to continue throughout the year.

The stories

Deb, 57, has lived with Raynaud’s from a young age. Brought up not to discuss her health, she was formally diagnosed at the age of 53 after she visited her GP about something else entirely.

Les, 64, has been living with Raynaud’s for over 50 years. He took our online test after seeing our piece on BBC Breakfast a couple of years ago; up until then he hadn’t realised his condition was so common and even had a name!

Sharon, 45, started experiencing symptoms of Raynaud’s in September 2019 and mentioned it in passing to her GP in November of the same year. She has since been diagnosed with Raynaud’s and Scleroderma.

Claire, 46, began experiencing symptoms of Raynaud’s in her twenties, but it wasn’t until she turned 40 that she sought advice from her GP. She experiences extremely severe and painful Raynaud’s attacks and says the condition affects her work and lifestyle. Steph, 39, is a postwoman and has been living with Raynaud’s since she was a teenager. Despite living with symptoms for decades, she had never visited her GP, believing it to be ‘one of those things.’ Steph was diagnosed in December 2019 after a Raynaud’s attack saw her taken to A&E. The condition affects her hands, feet, ears and nose.

June is Scleroderma Awareness Month

SHAPE THE FUTURE WITH A LEGACY GIFT A legacy gift is a unique and very meaningful type of gift. Research shows that around 54% of adults in the UK do not have a Will, and for so many people it’s because we don’t like to think or talk about it. However, making a valid Will lets you take care of your assets, your loved ones, and any charitable causes you care about in the way that you want. Investing in and shaping the future for years to come. When you pledge a legacy gift to SRUK, you and your family can take comfort in knowing that we value gifts at any level and will ensure that your priorities will be looked after by people who understand and share your values. Of course, it is important that your family and loved ones will be taken care of in any eventuality before your donation is committed, and there are several ways to frame a legacy gift to ensure this. Why I left a legacy gift Our members have been so generous with their legacy gifts over the years and their legacy has been to ensure that we can continue to invest in research, support and information for years to come.

The difference legacy gifts make Legacy giving over the years has been a vital source of income to SRUK, which has enabled us to fund ground-breaking research as well as continue to give support and help to people with Raynaud’s and Scleroderma to manage their conditions and improve their quality of life. How can you do it for SRUK? If you would like more information then we are here to help, you can find out more via our website. Please visit: sruk.co.uk/get-involved/ leave-gift-your-will If you prefer, you can contact us and we will talk you through what is involved and send you some more information. Please call 020 3893 5993, or email: jonathan.lord@sruk.co.uk Did you know? A gift to charity in your Will won’t be counted towards inheritance tax, reducing what your beneficiaries have to pay or even removing inheritance tax liability completely. Anyone leaving 10% of their estate to charity may qualify for a reduced rate of inheritance tax – 36% rather than 40%. Please see www.gov.uk/inheritance-tax for more information.

For Brian, it was really important to him to honour his wife Brenda’s legacy when she died. Her gift of £5,000 was special to them both because:

“Brenda was a great supporter of the charity and found your services and support extremely beneficial over the years and this was her way of saying thank you.” Brian

If you have a story to share or an idea to help raise awareness then please email pr@sruk.co.uk or call 020 3893 5991. 25

Fundraising Heroes

FUNDRAISING HEROES

SHINING THE SPOTLIGHT ON SOME OF OUR FANTASTIC SUPPORTERS! Matt Wilson, aka the Miniatures Apothecary, raised over £1,000 for SRUK in memory of his father, by holding a livestreamed painta-thon. This is the second year that Matt has held his paint-a-thon in memory of his Dad, who sadly passed away after battling scleroderma for many years. Matt and his Dad used to paint these miniature figures together, and he painted for an amazing 17 hours. An epic effort – thank you to Matt and to everyone that tuned in to support him.

The SRUK Support Group in Leeds held a virtual Catch up with a Coffee morning on 20 March. It was a fun event with cakes, a quiz and lots of fundraising. They have raised a fantastic £410. A big thank you to everyone that was involved.

Midlands Mugshot

Our Support Groups got involved with the #SRUKMugshot challenge as part of Raynaud’s Awareness Month. We asked people to hold virtual Catch up with a Coffee events and then share

their shots of them all holding their mugs! Thanks to the SRUK Support Groups in The Midlands and Northern Ireland for sharing their fantastic #SRUKMugshots!

If you have an idea or if you would like any more information on ways to get involved, please get in touch and we can support you every step of the way! #TeamSRUK Needs You! If you are interested in running for #TeamSRUK, or know someone who might be, we still have places available for different events in 2021/2022!

Step Forward with Lewis is a fitness club that caters for all abilities. They regularly support different charities with various fitness challenges, and in February they chose to support SRUK for Raynaud’s Awareness Month. The 28 miles in 28 days challenge raised over £400 and you can read about how Dannii took on this challenge on page 7. A big thank you to Michelle, Dannii and everyone that took part and donated.

For more information, please email fundraising@sruk.co.uk or call 020 3893 5993. Get ready to walk for Scleroderma Awareness Month

We missed so many events in 2020 but there is hope that these will start again in the summer, and we have lots of opportunities on offer across the UK. There will be something for everyone; whether you want to run a marathon or take on a fun obstacle race. You can check out the full list on our website at: sruk.co.uk/getinvolved/local-events 26

COULD YOU BE A FUNDRAISING HERO?

This June, we will be asking as many people as possible to walk for SRUK. Last year we launched our Virtual Relay Walk to raise £19,000 in June. This year we invite you to join us and walk your own distance, your way, whether

it’s 100 steps or 100 miles – your efforts really will make a difference. Make sure you pass on the baton and challenge your friends, family, colleagues or neighbours to join you and walk for SRUK. For more information, please contact us or visit our website: sruk. co.uk/get-involved/events/ virtual-relay-walk/

WAYS TO SUPPORT US Firstly, we would like to say Thank You. By receiving this magazine 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 Donate to us through as we do without our website at sruk.co.uk you and we are by clicking the donate always striving to button or by phoning our achieve more. If friendly team on you have an idea 020 3893 5998 using as to how SRUK your debit/credit card. can further support the community then we would love to hear from you.

Sources used We rely on several sources to gather evidence for our information. All our information is in line with accepted national or international clinical guidelines where possible. Where no guidelines exist, we rely on systematic reviews, published clinical trials data or a consensus review of experts. We also use medical textbooks, journals, and government publications. In our booklets, we list a sample of the sources used. If you would like further information on the sources we use on a particular publication, please contact the Information and Support Services team at info@sruk.co.uk.

Your Magazine, Your Way Your feedback is really important to us. If you have a comment or suggestion on how we can improve the magazine, please call our team on 020 3893 5998 or email info@sruk.co.uk. Your Stories We want to hear from you if you have a story that you would like to add to the magazine. 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 @WeAreSRUK

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