SRUK News - Summer Edition 2021 - Issue 22 by Scleroderma & Raynaud's UK

Issue 22 Summer Edition 2021

SRUK NEWS Meet some of our incredible Fundraising Heroes like Connie and Stacey (pictured), who took on the 50km Norfolk Ultra Challenge for SRUK!

SRUK’s Five-Year Anniversary We’ve come a long way, and we’ll keep on going!

UK Welfare Benefits Could you be entitled to a little extra help?

Scleroderma Awareness Month 2021 Full campaign coverage inside

SRUK’s Virtual Conference is coming on Saturday 11 September! Full details and how to register on page 22

Services Directory

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.

Our Online Community

Dear Supporters

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

It doesn’t seem possible that five years have passed since SRUK launched back in April 2016. A lot has happened over that period not least COVID-19, which has impacted on everyone but especially those in our community who are clinically vulnerable.

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. Our volunteer will arrange to call you on a regular basis: every week, fortnight or month. If you or someone you care for would like some more information, please contact us.

Local Support Groups Our local Support Groups are still as active as ever and working hard to keep people connected. 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 21 to read Celia’s story of the Support Group in South London.

For more information, please call O20 3893 5998 or email info@sruk.co.uk 2

Welcome

Pay Your Annual Membership by Direct Debit You are now able to sign up to pay your membership fee by annual direct debit. This means it’s a lot easier for you as you won’t have to remember to renew each year. A Direct Debit is easy to set up; please call us on 020 3893 5998 or visit sruk.co.uk/donate/direct-debit

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.

Events Update We are delighted with the return of face-toface and mass participation events; and we will keep working hard to support our incredible volunteers and fundraisers, wherever you are. If you would like to support us in other ways, there are still countless ways to get involved without the need to go to an event or even leave your home. To reach the fundraising team, please email fundraising@sruk.co.uk or visit us at sruk.co.uk/ get-involved/events/ and we will be very happy to help you.

The pandemic reinforced for me the power of community and how when we come together, we are so much stronger, but this isn’t new and is something that’s been in evidence within our community from the very beginning. And it’s this incredible support and commitment that has helped us grow after the last five years. We’ve seen our supporter base grow from 4,400 to over 10,000, which in turn has helped us double our income and work towards investing more in support services and research. When we set up SRUK, you said that you wanted us to increase awareness, provide information and support, ensure equity of access to treatment and care and increase our investment in research. Over the last five years we’ve strengthened our relationship with the media and increased coverage of Scleroderma and Raynaud’s, securing regular features in print, online and broadcast. In fact, we secured the first ever piece about Raynaud’s on BBC2’s Trust Me I’m a Doctor. As a result, we’ve seen a growth in traffic to the website, with a doubling in the number of web users and social media engagement.

As part of our support services programme, we produced 28 factsheets and publications with over 100,000 copies ordered or downloaded and our Helpline has taken over 9,000 calls. Over 85% of people report that our information and events help them to better understand and manage their condition. We’ve increased the number of support groups from nine to 15 in England, Scotland and N. Ireland, and aim to have two more in Wales.

I look forward to the next five years and what we can achieve together to reduce time to diagnosis and improve access to better treatments and care.

We recognised early on that we would have more impact if we worked in collaboration, and the creation of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has helped raise the profile of these conditions and put us in a stronger position to influence change. We are now involved in the DHSC’s Rare Disease Forum, providing feedback on the implementation of the Rare Disease Framework, as well as being part of the NHSE #BestMSK Rheumatology Transformation Working Group.

Over the last five years we’ve spent over £1.3 million on research, supporting ongoing grants as well as 14 new grants and projects. We have developed innovative partnerships with key institutions and industry, working with biotech to identify drugs for potential re-purposing, created a Raynaud’s App to track people with secondary Raynaud’s and explored non-invasive diagnostic tools. We now reach and support more people, thanks to your continued and loyal support.

Very best wishes

Sue Contents 4. Doc Spot: your medical questions answered Five years of SRUK

10. The Olive Ayoub Research Fellowship 11. Research Update: Stratified Medicine 12. SRUK Shop 15. UK Welfare Benefits 19. Your Stories: Navigating the benefits system 21. The SRUK Support Group in South London 22. Our Virtual Conference 24. Scleroderma Awareness Month 2021 26. Fundraising Heroes

Your medical questions answered

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

Doc Spot

My GP has suggested starting fluoxetine to help with menopause symptoms, and he also mentioned that it could help my Raynaud’s as well since this seems to be getting worse. I have read that some people report using this drug for Raynaud’s, but is it actually recommended for this condition, and is there anything I should be aware of?

Fluoxetine is a member of a class of drugs called serotonin reuptake inhibitors (SSRI) that are routinely used for the treatment of low mood and anxiety. The SSRI drugs work by increasing serotonin levels in the brain. However, they also reduce serotonin levels in the blood, and this can improve Raynaud’s symptoms. Like many drugs used in rheumatology, although a licensed medication, it is not formally “approved” for Raynaud’s, but appears to be safe and welltolerated. Clinical trials support this benefit and so fluoxetine is recommended by experts as a treatment for Raynaud’s in systemic sclerosis. Side effects can occur, but adverse reactions such as headaches or low blood pressure that are common with traditional drugs for Raynaud’s such as nifedipine, appear to be less frequent for fluoxetine. Any concerns should be discussed with your clinical team.

What is the advice regarding Botox® treatment for someone with scleroderma please? I am considering starting this as a cosmetic procedure, however is it safe when you have SSc, as I would not do anything that might cause further skin problems in the future?

Medical Botox® treatment uses very small amounts of a chemical from the botulinus bacterium to inhibit nerve and muscle function. Cosmetically, it can reduce visible wrinkles by relaxing facial muscles. Medically, it can improve involuntary spasm in

muscles or the bladder, and it may also help Raynaud’s symptoms. Although side effects can occur, there is no evidence that these are more common or severe in scleroderma. However, it will not reverse the disease process and benefits from a cosmetic perspective may be less in scleroderma due to disease-associated skin changes.

I have diffuse scleroderma and over the past few months the skin on my legs has become extremely tight - things seem to be getting worse. I have been prescribed steroid cream, but this does not seem to help. I am now struggling to walk even very short distances, and climbing the stairs is very uncomfortable. Is there anything that could help, and could this get better with time?

I have severe Raynaud’s and I would like In systemic sclerosis the extent of skin A to ask your advice regarding cold water thickening differs between patients. When swimming. Other swimmers seem to skin involvement includes the upper legs manage their symptoms at the and arms or the chest and abdomen time, but could this do any it is classified as “diffuse,” but if “Medical long-term harm for someone only the face, neck and Botox® can like me? extremities are affected it is improve involuntary “limited.” In both subsets, In general, it is spasm in muscles or the A thickening of the skin around advisable to avoid bladder, and it may also the ankles and tightening of cold exposure as this can the tissues including help Raynaud’s symptoms. trigger Raynaud’s, but tendons can limit range of Although side effects can many affected people do movement. In addition to manage to swim occur, there is no evidence treatments for the skin there regularly. Minimising that these are more may be benefit from drugs extreme cold and taking common or severe in used to treat the disease treatment for Raynaud’s scleroderma.” including mycophenolate mofetil regularly may help and it is (MMF) or methotrexate. Stretching unlikely that any permanent exercises and physiotherapy can also harm would be caused in primary be helpful. Raynaud’s phenomenon. In systemic

sclerosis there may be more risk of triggering an ulceration or more permanent damage to the blood vessels, and so it would be sensible to approach cold water swimming with caution. Do either the perimenopause or the menopause have an effect on Raynaud’s or Scleroderma symptoms please?

Both Raynaud’s and Scleroderma (systemic sclerosis) are much more common in women than men and this suggests that female hormones may be relevant, although the mechanisms are unclear. However, for Raynaud’s, patients have often reported improvement in symptoms after menopause. Since some menopausal symptoms themselves may overlap with those of scleroderma the situation is less clear, but no major changes in scleroderma have been reported related to menopause.

I have SSc and I have been told that I have a low platelet count. Is this connected to my scleroderma and is it likely to be a temporary issue?

Platelets are essential for normal blood clotting, but a low platelet count can occur for many reasons. An important consideration in systemic sclerosis is related to drug treatment that may suppress bone marrow function, such as azathioprine or cyclophosphamide and others.

Sometimes the disease can cause low platelet levels, for example associated with kidney involvement, and some patients develop related autoimmune conditions that can reduce platelet numbers. Low levels of platelets can indicate serious disease unrelated to scleroderma and any abnormality should be discussed with your clinical team and investigated or treated appropriately.

Doc Spot

Five years of SRUK

What type of physical activity would be most appropriate for someone who has interstitial lung disease with a lower limit of diffusing capacity in the lungs for carbon monoxide (DLco)?

Interstitial lung disease (ILD) describes scarring or fibrosis that occurs in lung tissue in a number of medical conditions including systemic sclerosis. It leads to “restriction” of lung function with reduced lung volumes and gas exchange (measured by DLco during lung function tests). Patients with lung fibrosis should generally continue to take as much exercise as is possible within the limits of their symptoms.

“PATIENTS WITH LUNG FIBROSIS SHOULD GENERALLY CONTINUE TO TAKE AS MUCH EXERCISE AS IS POSSIBLE WITHIN THE LIMITS OF THEIR SYMPTOMS. EVEN IF BREATHLESSNESS OCCURS IT IS STILL USUALLY SAFE TO EXERCISE AT YOUR OWN PACE.”

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

Even if breathlessness occurs it is still usually safe to exercise at your own pace, but situations that reduce blood oxygen levels severely should be avoided. This can be tested in the hospital during a standard sixminute walk test. Regular exercise may improve “deconditioning” that is a common problem in systemic sclerosis where the heart, lungs and muscles are less efficient at delivering increased oxygen to tissues during exercise.

FIVE YEARS OF SRUK

IT’S BEEN FIVE YEARS SINCE SRUK WAS FORMED AND IT’S A GOOD TIME TO LOOK BACK AT WHAT WE’VE DONE SO FAR TOWARDS ACHIEVING THE GOALS WE SET OURSELVES FOR 2017-2022. We asked our community, what’s important to you. We used this to develop our two core goals, and the objectives that will help us achieve these goals. In this article we highlight our progress so far on these objectives.

Awareness Our aim is to increase awareness of Scleroderma and Raynaud’s with the Public and Health Professionals

What we’ve done so far: Awareness campaigns – our June and February Awareness Months have secured National and Regional broadcast and press coverage every year. The first time Scleroderma and Raynaud’s have ever been featured on the BBC was in 2018 on BBC Two’s ‘Trust me I’m a Doctor’.

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

In February 2019, our CEO was interviewed on BBC Breakfast by Louise Minchin who has Raynaud’s. This resulted in over 21,455 people taking the online Raynaud’s test – up from 5,919 who took it the year before. We have a strong network of over 150 people who have shared their stories and have had many featured across TV, Radio and National press throughout the UK.

Because we can’t mention them all, here are just a few: • Jay Virdee on the BBC • Georgina Pantano in Metro • Sara McAreavey on BBC News and Radio • Cara Hockley in The Sunday Post • Una Gillespie in Tyrone Herald

diagnosis on the street and learn more about the condition. It ran for seven days, and we tested 623 people. 556 were diagnosed with Raynaud’s, and 18% were showing signs of being at risk of connective tissue disease. They were then given further information on managing the condition and a letter to take to their GP explaining their results.

• Gillian in The I News • Steph Rolfe on Sky News We have also developed novel approaches, including: The Raynaud’s Online Test Since it was developed in 2017, 144,867 people have taken it. Animations – Our 60 second animations have been viewed over 40,000 times! They’re a really effective way to raise awareness online. The groundbreaking Mobile Diagnosis Clinic in Leeds City Centre. In collaboration with Leeds University and Chapel Allerton Hospital, this was the first time UK residents have been able to seek a Raynaud’s 7

Five years of SRUK

Empowerment Our aim is to enable more people with Scleroderma and Raynaud’s to manage their conditions through access to high quality information, support and guidance Our online community has grown

“When I discovered the SRUK website it was an absolute lifeline and it was great to know that I wasn’t alone. I have been watching their various webinars and reading the myriad of information they have on their website and social media pages.” Sara McAreavey

Support groups We now have 15 groups which are such a fantastic support network and members find them invaluable: “I discovered the SRUK Support Group Midlands and find it helpful to know there are others who understand the difficulties the disease brings. I’m 80 now and I feel that scleroderma is taking a firmer hold. I have kidney and lung issues, painful bones and joints and my mobility has decreased, plus other accompanying discomforts. COVID hasn’t helped as I’ve had less faceto-face appointments with consultants. I’ve also drawn the short straw as two years ago I acquired breast cancer. BUT I’m on a mission now to make it to 90. Thank you SRUK – you keep me afloat.”

SOCIAL MEDIA FOLLOWERS

970 Registrations 518 Views on the day 4,991 Views on YouTube

For many people, our online support is a really important way to get information, make connections and feel supported.

Betty Taylor: Midlands Support Group

Helpline We have 15 Helpline volunteers and on average we answer over 1,800 calls every year.

In 2020, we launched the Keep In Touch phone service, offering people feeling isolated by the COVID-19 restrictions the chance to have a regular, informal chat.

Healthcare Our aim is to ensure all people with Scleroderma and Raynaud’s, across the UK have access to high quality, integrated health and social care services, which are responsive to their needs We worked with NHS Choices to improve their information as their guidance that: “Raynaud’s often went away without seeing a GP,” was misleading. Our information is available in 35 clinics. SRUK is a member of several strategic alliances focussed on securing the best outcomes for people living with rare diseases. SRUK is a founding member of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), of which our CEO is co-chair. We have strengthened links with other European and international organisations and agencies, including The World Scleroderma Foundation. Our Chief Executive Sue Farrington was elected President of the Federation of European Scleroderma Associations (FESCA) in March 2020.

“The Helpline has evolved from a just a few Helpliners to many more volunteers with SSc and Raynaud’s that callers hopefully find useful. With ongoing training and support from SRUK we hope to provide a fully rounded service. Every call is different and confidentiality is essential. When someone tells you that you’ve really helped it’s very humbling. We all share a wish to give something back to the community and help fellow peeps with SSc who may be struggling to find quality information, find a specialist, local group or just speak to someone who understands what it’s like to live with SSc.” Kim Fligelstone

SRUK has contributed to several consultations and lobbied for: • Faster access to effective new drugs & treatments • Improvements to appraisal process for new medicines • Getting rare autoimmune diseases on the agenda • Reform of prescription charges As part of RAIRDA we: • Produced the ‘State of the Nation’ report in 2018, highlighting the challenges and setting out a series of recommendations. • Produced a report based on a survey of 1,300 people, looking at the impact of COVID-19, and gave evidence at the All-Party Parliamentary Group on Vulnerable Groups to Pandemics. • Hosted a roundtable with patients, clinicians and NHSE to explore challenges & solutions and are now part of the #BestMSK Working Group. • Met with the Vaccines Minister and the NHS to raise issues around shielding and vaccinations.

Research Our aim is to ensure that research funded by SRUK translates into better prevention, diagnosis and treatment outcomes Over the last five years SRUK has spent £1.4m on research, supporting ongoing grants, and awarding new grants and projects.

What we’ve done so far: • Worked with patients, clinicians and industry to develop the organisation’s first Research Strategy which set out four key research themes: precision medicine, early detection, quality of life, understanding the cause.

• Held the Anne Mawdsley Memorial Lecture at the House of Commons, at which Professor Christopher Denton gave the lecture, ‘Making progress in a hard disease – rising to the challenge of scleroderma’, which charted the progress made over the last thirty years, citing how financial support from the charities had played a role in driving this success. • Secured jointly funded fellowship with the Medical Research Council to support the careers of promising researchers. The first award has been made and more details will be announced soon. • Held a three-day workshop, bringing together 24 researchers from medicine, bioscience, engineering and data science to consider what non-invasive diagnostic tools could be developed. We have awarded two grants. • Secured a partnership worth £250,000 with Insilico Medicine, a biotechnology company using AI to identify potential therapeutics for re-purposing, targeted at the fibrotic aspect of scleroderma, which identified five drugs for re-purposing and two novel compounds. We are now considering how best to take this work forward.

• We developed a Raynaud’s App with Healthbit, piloted with Dr Francesco Del Galdo at Leeds University, to track the outcomes of 400 people with severe Raynaud’s. Our community have baked, run, walked, cycled, donated, shared stories and spread the word, you have given legacy gifts, in memory gifts and kept us going now and for years to come. 2016/17 to 2020/21

£442k £2.2m

• We partnered with D4T4, through the successful bid for Microsoft’s AI for Good, to enable collection of data to facilitate the earlier detection of systemic sclerosis.

THANK YOU all of this is only possible with the support of our community; and we are very proud to work with you, to support you and to keep striving to achieve our collective goals.

Research

THE OLIVE AYOUB RESEARCH FELLOWSHIP

STRATIFIED MEDICINE

We are incredibly grateful to Olive Ayoub, who chose to bequeath a very generous legacy to SRUK in her Will. Her gift has enabled us to fund the Olive Ayoub Research Fellowship, that will help to train the next generation of scientists in scleroderma research, helping to ensure the future of the field. We would also like to thank Olive’s friend Chris, for enabling us to share Olive’s story with our community.

SRUK is proud to announce our next funding call for scientific researchers: Stratified Medicine of the Future - a joint grant call with the World Scleroderma Foundation!

Olive Joan Ayoub was born in Plymouth on 5 February 1922. She was very proud to tell that she was born with a caul, and this thing of beauty happening in less than one-in-80,000 births made her special: she certainly was. She was an intelligent and active child with a passion for art, music and drama and a determination to explore the world and its people, and these personality traits never left her. After school, she moved to London to train to be a teacher of Art and English. She loved London and embraced all the new experiences that the city had to offer. She made many friends, and it was here that she met her beloved Abdu, who was at university studying linguistics. From the tales that she told of her student life she was very much a lady ahead of her times. Olive taught for a while in London while Abdu completed his PhD. When he graduated, they married and went to live in Egypt, where Abdu took up a post at a university.

Research

Olive always described her life in Egypt as “wonderful,” and was excited by all that the new culture had to offer. She carried on teaching, eventually becoming a headmistress, and Abdu continued with his academic life, lecturing and writing several books on linguistics. Abdu’s work led him to be invited to lecture at many universities in the world and to attend conferences. Olive loved to accompany him when she could, fulfilling her dream to explore the world. During the summer breaks, Olive and Abdu would either take off in their car with a tent in the back and travel wherever the road took them, or they would take cruises. Following Abdu’s retirement, they moved back to London, and for a while enjoyed the cultural experiences that they had come to love as students. Sadly, Abdu’s health deteriorated, and they moved to sheltered accommodation in Abingdon, Oxfordshire. Olive retained her good health, practicing yoga until she was in her mid-eighties, and with the help of carers she nursed Abdu until his death. She was eightynine at this time!

Olive was befriended and supported by her neighbour Helen. They became firm friends, and Olive used to say that she had found her sister. Helen has scleroderma, and as she became increasing debilitated by her illness resulting in the amputation of one of her legs, Olive was determined to do what she could to help Helen and the wider scleroderma community. This desire to help resulted in her decision to leave a legacy, which she endowed to SRUK. Olive died at the age of 97, and until the last few months of her life she retained her sharp wit and her altruistic approach to life. She was a remarkable lady, and it is fitting that her name will be attached the Research Fellowship that her legacy will support.

THE LATEST SRUK GRANT CALL

SRUK strives to fund research that is most likely to have the greatest positive impact on and for our community. This is why £100,000 will be awarded to the top research proposal linked to stratified medicine. But what is stratified medicine, and why is this so important for people living with scleroderma?

What is stratified medicine? In short, stratified medicine, otherwise known as personalised medicine, works by identifying subgroups of patients within the larger group, by factors that make their condition different. There are many things that can separate subgroups, including differing mechanisms of disease, response to certain treatments, speed of onset or simply a person’s genetics. Breaking down the larger population into smaller groups enables the tailoring of treatments to each particular group.

Why is this important for scleroderma research? Scleroderma is an incredibly complicated condition. Multiple organs can become involved, the rate of progression varies for different people and the age of onset can also vary significantly. All of this indicates that within the broader scleroderma population there are

subgroups. Some of these have already been identified, such as limited or diffuse SSc, and this has allowed clinical trials to be designed more specifically, resulting in more specific treatments. This grant call hopes to initiate work in identifying more groups, and designing targeted diagnosis and treatment methods for those subgroups.

Practical example of stratification Imagine a group of people taking part in a clinical trial for a new treatment, all of whom have scleroderma. Half of the participants (Subgroup A) have Gene 1 turned on, and half of the patients (Subgroup B) do not. This splits the group into two subgroups. If the scientists running the clinical trial can identify this, they can assess the effect of the treatment on each group separately, meaning that if it only benefits people in Subgroup B, then the drug can be licenced for just that group. If, however, the two subgroups cannot be identified and separated (stratified), then the treatment may not be licenced at all, since the population as a whole was not shown to improve sufficiently.

Who are The World Scleroderma Foundation, and why are we partnering with them? The World Scleroderma Foundation promotes and supports global research into all aspects of scleroderma, and has partnered previously with SRUK on the grant call: ‘Outcome Measures in Systemic Sclerosis.’ The two successful projects from this grant are developing a series of outcome measures to assess the efficacy of treatments in dcSSc and lcSSc – two of the aforementioned subgroups identified within scleroderma, highlighting how vital it can be to stratify patients. Together, SRUK and the WSF are providing funding to a ‘first step’ project, to generate pilot data which can be used to support a larger, follow-on application.

Shop

12% Silver Socks

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.

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 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.

Heatholders Thermal Lite Socks These thermal lite socks offer a 1.6 tog rating, promising warmth and extra protection against the cold. No matter what you are doing, whether it be spending time outdoors or curled up inside, these socks offer additional comfort in all weather conditions.

Available in 8% or 12%. (NB 8% = silver, 12% = black).

Size 4-8 (women’s), come in three different colours: blue/grey or blue and purple. Size 6-11 (men’s), come in two different colours: dark blue or blue/navy.

XS, S/M, L/XL

12% = £23.50 8% = £12.50

£7.00

MyCoal Hand Warmers

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.

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.

£4.99

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.

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

£5.49 - Box of foot warmers: £43.99 (40 pairs)

Jar Key Gently lever the jar key against the rim of a lid to release the vacuum inside the jam jar, making it easier to open. Helps people with hand conditions.

£7.00 12

Shop

UK Welfare Benefits

Silver Socks & Gloves

Cost

Qty

Size

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

Colour

WELFARE BENEFITS How to navigate the system and make a successful claim Are you entitled to a little extra help? Many people in the UK who are living with a long-term condition are eligible for certain welfare benefits, and it may be well worth finding out if you could be one of them. Benefits can help with any extra costs that arise from living with scleroderma and could help to make things just a little bit easier.

SRUK Face Mask

£5.50

Heatholders Socks (4-8 or 6-11) Please specify the colour

£7.00

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

What is a disability?

MyCoal Foot Warmers Box

£43.99

Jar Key

£7.00

Whether or not someone identifies as having a disability will always depend on their own individual circumstances. In English law however, disability is defined by the Equality Act 2010 as follows:

If you have been diagnosed with Scleroderma or Raynaud’s, you may be entitled to receive some support from the UK welfare benefits system. Even if you have never claimed anything in the past, it is important to know if you could be eligible, since a little extra help can often make a big difference.

Postage & Packing Costs 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 Postage & Packaging To include a donation please add here Total enclosed Name Address

“A person has a disability … if they have a physical or mental impairment, and the impairment has a substantial and long-term adverse effect on their ability to carry out normal, day-to-day activities.” Equality Act 2010 S.6(1)(a)(b) This definition will also cover someone living with an illness that affects their ability to undertake daily activities, including Scleroderma and Raynaud’s in certain cases. Disability is a protected characteristic under the Act, meaning that someone cannot be directly or indirectly discriminated against because of this characteristic.

UK welfare benefits and the SRUK community There are several benefits that could apply to people within our community, and not all of these are means tested; meaning that your income and savings will not be relevant when you make an application.

Means tested Universal Credit (UC) This benefit takes into account your (or your partner’s) earnings, savings, or capital.

Contribution-based ‘New Style’ Employment and Support Allowance (NSESA) ‘New Style’ Jobseekers Allowance (NSJSA) These benefits do not consider earnings, savings, or capital, but are based on your previous National Insurance contributions.

Non-means tested

Postcode Telephone

Personal Independence Payment (PIP)

Attendance Allowance (AA) Carers Allowance (CA) (earnings-based)

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

These benefits do not consider your (or your partner’s) earnings, savings, or capital.

UK Welfare Benefits

Applications and assessments When you make an application, the best supporting evidence to submit will be medical evidence from your GP, giving details of your diagnosis and how your condition affects your life. You can also use evidence from anyone involved in your day-to-day care. Always send everything via Royal Mail Recorded Delivery. Face-to-face assessments are being reintroduced as COVID-19 restrictions are lifted, however you have the right to ask for reasonable adjustments to be made, and assessment providers have a public duty to provide for these to avoid substantial disadvantage to people living with disabilities. If you do not feel safe travelling to the interview location and feel that you need a home-based assessment, do not be afraid to say so. You can also request reasonable adjustments if you are asked to attend an appeal to Her Majesty’s Courts and Tribunals Service (HMCTS).

Means tested benefits Universal Credit (UC) Universal Credit (UC) is designed to help people on low incomes with costs such as rent and utilities. It is open to all working-age claimants in the UK aged over 18. UC is paid monthly, and you must be on a low income or out of work to be eligible, with exceptions for 16–17-year-olds in certain circumstances. UC is paid at the following rates: Single and under 25: £344 Single and over 25: £411.51 Couple under 25: £490.60 (for both) Couple over 25: £596.58 (for both) 16

UK Welfare Benefits

Because this is an incomerelated benefit, a claimant (and their partner’s) earnings, savings and capital will be relevant. If you have between £6,000 and £16,000 then a ‘tariff income’ will be applied. This means that for every £250 you have (in excess of £6,000) up to £16,000, £4.35 per week will be deducted from your UC. If you have over £16,000 then you will not be eligible for UC at all.

Contribution-based benefits New Style Employment and Support Allowance (NSESA) If you have an illness or disability that impacts upon your ability to work, you may be able to claim New Style Employment and Support Allowance (NSESA). This is paid based on your previous Class 1 or 2 National Insurance contributions over the past two - three years, so you must have paid (or been credited) sufficiently to be eligible. To apply, you will need a note from your GP signing you off from work. NSESA is awarded at a basic rate of £74.70 per week and is paid fortnightly. Within four weeks of your first payment, you should receive an ESA50 questionnaire form in the post. This is a work capability questionnaire designed to help you explain your diagnosis and how this affects you. You will need to fill out the form to the best of your ability, supplying as much medical evidence as possible. Again, it is advisable to return this via recorded delivery. You will then be invited to a Work Capability Assessment (WCA).

Work Capability Assessments

‘New Style’ Jobseekers Allowance (‘New Style’ JSA)

You will be contacted by an independent Assessment Provider (AP) who will arrange the WCA. Assessments are undertaken by the AP’s employed Healthcare Professionals (HCPs), who will discuss your conditions and ask how these affect certain activities. Remember that reasonable adjustments can be requested under the Equality Act. You will be assessed on certain work-related activities under two specific categories:

‘New Style’ JSA is another working-age benefit that is based upon previous Class 1 or 2 National Insurance contributions. You can only receive ‘New Style’ JSA for a maximum of 182 days, then you must switch to Universal Credit.

1. Physical disabilities include mobility, standing and sitting, manual dexterity, communication and understanding, bladder and bowel evacuation and safety of consciousness during waking hours. 2. Mental, cognitive & intellectual function includes learning and retaining information, awareness of hazards, getting around without support, social engagement and behaviour.

‘New Style’ JSA is paid weekly, and the rate that you receive is age-based: • Aged under 25 - £59.20 • Aged 25 and over - £74.70 You must be fit and able to seek work for each week you are paid ‘New Style’ JSA – this is the ‘jobseeking period.’ In addition, you should not already have a Limited Capability for Work (LCW), because you must have a current jobseeking agreement, that satisfies the following conditions: • You are available for work each week. • You are actively seeking work each week.

If you receive at least 15 points from the assessment you will be given a Limited Capability for Work (LCW). You will then be placed into one of two groups:

You can work for up to 16 hours per week whilst receiving this benefit.

1. The Work Related Activity Group

Personal Independence Payment (PIP)

2. The Support Group, where you will also receive an additional regular payment of £39.40. NESA can only be claimed for 356 days unless you are placed into the Support Group, when you can continue to claim beyond this timeframe.

mobility needs, to help with the extra costs surrounding life with a long-term illness. PIP is available to claimants below state pension age; and you may be able to claim even if you are working or studying.

There are ten activities under the Daily Living component and two under the Mobility component:

PIP has two components:

• Taking nutrition

• The Daily Living component: to cover extra costs if you need help doing everyday activities.

• Managing therapies or taking medications

• The Mobility component: if you have difficulties in getting around. Each component can be paid at either the standard or enhanced rate, depending upon whether you can carry out the relevant activities under each component reliably.

Daily Living component • Standard rate £60.00 per week • Enhanced rate £89.60 per week

Mobility component • Standard rate £23.70 per week • Enhanced rate £62.55 per week

Daily Living • Preparing food

• Washing and dressing • Toiletry issues • Communicating verbally • Reading and understanding signs and symbols • Engaging with people face-to-face • Making budgeting decisions Mobility • Planning and following journeys • Standing and then moving around You will be asked to attend an assessment, where you will need to score eight points to receive the standard rate or 12 points for the enhanced rate.

Non-means tested benefits

Personal Independence Payment (PIP) is for people with daily living and/or

UK Welfare Benefits

Remember that you can request reasonable adjustments if necessary. Attendance Allowance (AA) Attendance Allowance (AA) is for people of state pension age who need attention or supervision with their personal care, regardless of income, savings, or National Insurance contribution record. To be eligible you will need to show: • You have reached state pension age • You have a physical or mental disability • Your disability warrants attention or supervision for your care or safety • Your conditions have been present for six months AA is awarded based on the level of care you need, and whether you meet a daytime or a night-time condition. Daytime conditions You must show that you require either: • frequent attention throughout the day in connection with bodily functions; or • continual supervision throughout the day to avoid danger. Night-time conditions You must show that you require either: • prolonged or repeated attention throughout the night in connection with bodily functions; or • another person to be awake during the night for prolonged periods or at frequent intervals to avoid substantial danger. 18

Your Stories

There are two rates at which AA can be paid:

To be eligible for Carers Allowance, you will need to meet each of the following criteria:

• Low rate – £60 per week Where a claimant satisfies a daytime or a night-time condition, or if they are on kidney dialysis.

• Aged over 16 • Not in full-time education

• High rate – £89.60 per week Where a claimant satisfies a daytime and a night-time condition. A claimant can also receive high rate if they are terminally ill. If you already have an existing claim for Personal Independence Payment (PIP) or Adult Disability Living Allowance (DLA), you cannot make a new claim for Attendance Allowance.

• Earning less than £128 per week (before expenses) • Resident in the UK and not subject to immigration control You will not be eligible for Carers Allowance if you are earning more than £128 net per week, although your partner’s earnings will not be counted. Temporary breaks You can take a temporary break from caring for up to four weeks, if:

Carers Allowance (CA) Carer’s Allowance is for carers who have ‘regular and substantial’ caring duties for a ‘severely disabled’ person, for at least 35 hours per week. Although Carers Allowance is taxable, it is not means tested. It can be backdated for up to three months.

• You have been caring for 35 hours per week for 22 weeks out of the last 26; or, • For 14 of the last 26 weeks, the reason you did not provide care was because one of you was in hospital or a similar situation.

CA is paid weekly at £67.60, and you could also receive a top-up payment called a ‘Carers Premium’ or ‘Carers’ Addition’ added to certain other benefits as well. This article is intended for general information purposes only. For advice that is tailored to your own personal circumstances, please contact the Disability Law Service by calling 0207 791 9800 (option 5) or by emailing benefits@dls.org.uk We would like to thank Richard Conway of the Disability Law Service for his help and support in producing this article. For more information, please visit dls.org.uk

YOUR STORIES: Navigating the benefits system Diane’s story Diane Morris is 63 and lives in Pontyfract, West Yorkshire with her husband. She was diagnosed with scleroderma in December 2017, after experiencing symptoms for at least nine months without a diagnosis. She was eventually diagnosed after seeing a consultant privately, who made a referral to a rheumatologist. Before her diagnosis, Diane had a successful career spanning 27 years with a high street bank, including four years as a bank manager. Living with scleroderma has meant that she has now stopped working and has also made some other lifestyle changes, including navigating the UK welfare benefits system for the first time. This is her story. I had symptoms of systemic sclerosis for a long time but struggled to get a diagnosis. It started with some swelling in my feet, and I was exhausted all the time. I then developed Raynaud’s Phenomenon, not knowing what it was. In late October 2017, I bought some sweets for Halloween and ate just one. I then suffered reflux for the first time in my life and again, I did not really know what to do as I had never had this before.

at a loss as to what to do next, I eventually went to see a but there is help out there. A private doctor and told him lot of people have never heard all my symptoms. He actually of scleroderma and the first said: ‘I believe you have place they look is on the scleroderma,’ but internet, which can refused to write it be daunting. down for me “When you when I asked, I had not as he did complete the form, look thought not want at it first and make notes about me to applying before filling it in, as more look it up for any details will come into your head on the benefits internet. as you go along. However small before, as I was something is, always include I was still referred receiving it, even though you might to Dr del income not think it is anything Galdo in from my important.” Leeds and I employer, and was so relieved, as I had never as I finally knew encountered the what it was. benefits system before I just thought that I wouldn’t be I started on medication, but entitled. But I was assured that from January 2018 until the I should be eligible, so in the following March I was very end I decided to do it. poorly and ended up losing about three stone in weight. I applied for my Blue Badge and it arrived in the post a few I first attended a listening weeks later. This was then due group for people with for a renewal in March 2021, scleroderma during April 2018, and at this point I was required and this was where I first heard to have an assessment. It about Personal Independence lasted for about 20 minutes, Payment (PIP), as well as the and I was asked different Blue Badge to allow parking in questions: e.g. about how far I a designated Disabled space. was able to walk. The listening group was a great support to me when I was first I also decided to apply for diagnosed, and it’s because PIP in August 2018, and of the chats I had with other received the form in the people that I decided to apply post. When I went through for the benefits. When you are this, I realised that it was newly diagnosed you may be asking about aspects such as

Your Stories

preparing food, eating and drinking, washing and dressing, communication, reading and making decisions about money. I had been advised to give as much detail as possible, so I did; there is not enough space on the form for all the information, so I had to attach additional sheets. I included a letter from my doctor, as well as a letter from my friend. Your score points for each aspect, and it is important to send evidence and examples of everything. Explain how you manage different activities, whether you have any aids that you use or if there is someone who helps you. Even if it seems like a very small thing, it is still worth noting down on the form. You can also ask the doctor for a report to support your application. I also had another assessment, which took place at my home. The nurse did not seem to have very much empathy at the time. At the end, I asked to see what she had written down, but she refused. I felt quite daunted when she was taking notes and I did not really know what to expect. In December, I learned that my application had been declined, and I decided to find out why. I did not agree with many of the nurse’s findings, and I was advised to appeal, so I telephoned to find out the process, and when I was told that it was likely to take a long time, I decided to get in touch with my MP. It is only because I challenged the decision that I was successful. I had sent supporting evidence with my application and was told that

Support Groups

one of the reasons that this was declined was due to lack of evidence. When I said that I had sent the evidence it was decided that my claim would be looked at again. Always ask to see the report from the person who assessed “Tell them about you if you are not successful at first, any changes you have just in case you had to make, or any help do not agree you are getting from another with something. person. For example, you I was eventually awarded PIP in might use a straw, or walking February 2019. stick, or an adapted knife and My award should fork. Tell them how you have come to an manage each activity end in March 2020; now.” however, this was extended due to the pandemic. I am now due a review and I have the form already. Always tell them if anything has changed and approximately when: for example, I now use a drinking straw and adapted cutlery, and all these things are important. Include any relevant examples, e.g. hospital admissions or treatments. I have since persuaded another lady from the listening group to go for it and apply for her Blue Badge. She applied, she went for the assessment and was successful, and she has said that she can’t believe the difference it makes. Even if like me you think that you are not entitled to any benefits ... go ahead and try, you have nothing to lose.

THE SOUTH LONDON SUPPORT GROUP Celia Bhinda leads the Support Group in South London. She was diagnosed with systemic sclerosis 30 years ago whilst on a trip to the United States, when she suddenly experienced extreme pain that was particularly acute in her hands and feet. Her diagnosis happened very quickly, and she was told that she had both scleroderma and rheumatoid arthritis. Celia started the South London Support Group over a decade ago, and they have been growing ever since. She lives with her husband in South London. Although this diagnosis has been a life-changing experience, I find that having accepted the condition and adjusted to it, in practice I live with some limitations on what I can do. Nevertheless, I try to engage with life as fully as possible. The South London Support Group started about 15 years ago. It all began when I made contact with another lady through the Scleroderma Association, and we eventually met one another at a café in London. We quickly grew to

three people, and then we just kept on growing; today our group is 11-strong.

remained active by going online, and we now use Zoom as the main platform for our meetings.

Initially, we would meet in a coffee shop, As a physical group and we also met there were six of several times us, but now that “As Support Group at the O2 we are online leader, I get a really in North we have good feeling from knowing Greenwich. acquired that people who may not Then, for even more about members. have been able to share their six years Before the feelings before can now talk to before the coronavirus others who know what they pandemic pandemic are going through: that is struck, we we were all amazing.” held our female, but meetings at now we are a one member’s mixed group thanks home, where we to some of our new would get together once members. Using Zoom is easy every three months. This for everyone, especially as came about when I attended some people are working from a scleroderma Family Day at home, so it may not have been the Royal Free Hospital and convenient for them to attend met another SRUK member meetings in person. Some who very kindly offered her people join our Zoom meetings home for future Support Group from other parts of London meetings. We then started to and even the Home Counties, go there, and we acquired new so it has actually been easier members because we now for all. had a proper venue. This was As Support Group leader, I a real attraction for people, as get a really good feeling from they could come from all over knowing that people who London and even further afield. may not have been able to The house remained our venue share their feelings before until COVID-19 began; our host can now talk to others who provided tea, and we would know what they are going bring cakes. These meetings through: that is amazing. It is were always friendly and also about mutual support. supportive. We would just chat, A lot of positive things come covering all different aspects out of the Support Group, for including hospital visits and example, someone will raise an different medications, and issue that another person will we all became good friends. have already been through, so Since the pandemic we have 21

Support Groups

SRUK Virtual Conference 2021

they can give advice. In this way, members can be offered practical support. As we move forward, I think that our Zoom meetings will continue. It is so convenient, especially if people are working and can’t physically travel to a meeting place. The physical meetings may happen as well, but I think that these are likely to be less frequent now. I do really enjoy being the South London Support Group leader. I also find that now we are meeting over Zoom I have more of a chairing role to play than I did before when we used to meet in person, just because there are more agenda items. For example, we can now have someone from SRUK join us to give a presentation. I ask our members in advance for any topics that they would like to discuss, and this gives shape to the meeting. When we were meeting physically things were more ad hoc, but now it has to be more organised with a larger Zoom group. I feel that Support Groups are very important for many people, as I think that mutual support from people who are living with the same condition can be crucial to your feeling of wellbeing. It can be such a positive experience. For myself, I have found that setting up a Support Group has been an extremely rewarding thing to do.

Join us for our first-ever Virtual Conference Saturday 11 September 2021 09.00 – 17.30 (GMT+1) Join us and learn more about Scleroderma and Raynaud’s from expert speakers who are leaders in their fields. Our ground-breaking Virtual Conference is a unique opportunity to learn more about Scleroderma and Raynaud’s. For the first time, we have gathered experts from across the world to talk about advances in treatments, tips for self-management, new research and so much more. Our programme will cover a wide range of key topics that our community said were important to them. This will be an interactive conference experience designed to give you the opportunity to ask leading healthcare professionals questions in real time, speak to and connect with others in the community, interact with our exhibitors and relax in our health & wellbeing zone.

Further information about the Virtual Conference, including how to register, can be accessed by visiting srukvirtualconference 2021.vfairs.com

Scleroderma & Raynaud’s UK is delighted to invite you to join our Virtual Conference on Saturday 11 September 2021

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

• Pre-recorded presentations: When you register you can access the sessions for up to 30 days after the event

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

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

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

• Downloadable resources

Agenda highlights • The latest advances • Can patient data save lives? • Caring for your skin, hands and feet • Interstitial lung disease in SSc • Does Dr know best? • Localised scleroderma in children and adolescents

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

• Virtual networking communications, social events and more

• Face facts • Annual tests – what is PAH? • Understanding GI tract involvement • What does the future hold?

srukvirtualconference2021.vfairs.com

For all enquiries, please call 020 3893 5998 or email conference@sruk.co.uk 23

Scleroderma Awareness Month 2021

THANK YOU FOR SUPPORTING SCLERODERMA AWARENESS MONTH June was Scleroderma Awareness Month. Our aim was to Educate, Engage and Empower; keeping the conversation going by sharing real stories, talking about the signs and symptoms and all the ways that SRUK can support people.

many comments from people who were affected by this message.

Sharing stories really makes a difference, here are some of the comments we’ve received on social media: “Really saddened to hear about what happened to your daughter. But proud to see how you’re honouring her memory. As a sufferer I hope your efforts and from others help advance the science.”

World Scleroderma Day – 29 June 2021 Scleroderma associations and charities all over the world promote awareness throughout the month, with World Scleroderma Day on 29 June. Each organisation has their own campaigns and stories that share a united message, which this year was “I am my passion not my disease.” Throughout June, we shared stories of people who do not let scleroderma stop them from doing what they love; from skydiving to teaching music and playing with their children. 24

In partnership with FESCA (Federation of European Scleroderma Associations), we produced an animation highlighting the three key symptoms to look out for. It was viewed more than 154,500 times during the month via our social media promotions. You can watch this animation and FESCA’s video on our YouTube channel: WeAreSRUK, or on our website: sruk.co.uk

Coverage At the start of June, The Sunday Telegraph ran a story about the need for better treatments and the impact that COVID delays have had and will continue to have on people with scleroderma.

Throughout the month we had local coverage across the UK about our SRUK Walk – urging people to walk to raise funds as well as awareness. You can read more on page 26. We had interviews on BBC Radio Cumbria and BBC Radio Norfolk, and Philip Beckett was featured on Sky News. Philip’s talked about his daughter Lauren who died of scleroderma in 2018 aged just 27, and how he is raising £50,000 for SRUK to help raise awareness and improve diagnosis and treatments. His interviews on Sky and Radio Norfolk had such an impact that he received over £450 on his fundraising page, as well as

“Just watched your interview on Sky. I lost my wife to scleroderma in September. Carry on the great work.” “Wishing well, full of admiration for your raising awareness of autoimmune disorders. Currently going through a long and frustrating process myself, to find a diagnosis. Inspired by your resilience.” “This horrible disease also killed my mum, again not diagnosed until far too late. SRUK are a fantastic charity helping sufferers and raising awareness of this destructive and very rare condition.” “Your moving interview on the news this morning was really informative.” “How beautiful yet heart wrenchingly true. You have put into words how it feels on this journey. Thank you.”

“I think the worst thing is not knowing what symptoms might show next, and is it do with systemic sclerosis or something else. However I am the eternal optimist and will never let this get me down, I still exercise, knit, read and do gardening, just not as quickly as I used to!”

“I went kayaking with my daughter last week. Continuing to do firsts and pushing out of comfort zone helps keep positive. The uncertainty of this disease sometimes is overwhelming. I too have SSc.”

Fundraising Heroes

FUNDRAISING HEROES

SHINING THE SPOTLIGHT ON SOME OF OUR FANTASTIC SUPPORTERS!

We would like to thank Keri de Souza, who has pledged a legacy gift to us – she was inspired by her mother, Lucinda de Souza, who also left us a legacy gift. “One of the abiding images I have of my mother is her cooking wearing fingerless gloves. She tried to carry on doing the things she loved (she was an excellent cook), but I know that she suffered so much from the effect of Raynaud’s on her hands and fingers. She left a legacy to SRUK, and I decided to do the same in her memory” Thanks to Nicola Tilley, who has raised £150 by teaching Zoom Pilates lessons during lockdown. Maya Davidkoda, has taken to her bike and cycled 140km for SRUK, equating to 400 laps of her local recreation ground. Maya, who is aged nine, was inspired to raise money after reading an article in National Geographic Kids magazine and chose to support SRUK as her mum Tanya has Raynaud’s and Scleroderma. Maya smashed her £500 target, raising over £650.

WE WOULD LIKE TO THANK EVERYONE WHO PARTICIPATED IN THE SRUK WALK Claire O’Farrell and her dog Ivy have walked 105 miles over the month of June, and raised over £280!

We would like to thank Connie Vallis and Stacey Halford, who took on the 50km Norfolk Ultra Challenge in preparation for the London Marathon, and raised over £1,000! Connie and Stacey battled bravely through mud, waist-high grass, 30-degree heat and poor directions to complete the course in six hours and 40 minutes.

Zoe and her mum Caz raised over £150 walking 10,000 steps every day during June, and Xandro Rinaldi walked the 1200 mile distance between Land’s End and John O’Groats, and has already raised £400! Daniela Coppola is taking part for the second year and is well on her way to reaching her target of £500!

COULD YOU BE A FUNDRAISING HERO? 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! For more information, please email fundraising@sruk.co.uk call 020 3893 5993 or visit sruk.co.uk/get-involved

C O’Farrell ire la

THANK YOU

Sam Law, aged 10, has raised over £150 by running 9.5 laps of his local sports field, adding up to 5km. Sam’s mum Claire has diffuse systemic sclerosis, and Sam wanted to fundraise for SRUK to help support research into scleroderma. 27

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 Donate to us not achieve as much through as we do without our website at sruk. you, and we are co.uk by clicking the always striving to donate button or by achieve more. If phoning our friendly team you have an idea as on 020 3893 5998 to how SRUK can using your debit/ further support the credit card. 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, all the inner pages can be recycled locally to help look after our planet.

www.sruk.co.uk Helpline: 0800 311 2756 @WeAreSRUK

/WeAreSRUK