SRUK News Autumn 20 by Scleroderma & Raynaud's UK

SRUK NEWS Sue and Lee walked almost 200 miles and raised over ÂŁ3000 for SRUK, all in support of Caroline.

Better days Find out how a little change can change a lot

The rise of telemedicine Getting the most from your virtual appointment

The potential benefits of Tai Chi Find out more on page 7

Cancel Christmas? Not us!

Read their inspiring story inside

Join in and celebrate with SRUK!

Issue 19 Autumn Edition 2020

Events Calendar

Welcome

SERVICES DIRECTORY Helpline: 0800 311 2756 Our free Helpline is available to enable anyone affected by Scleroderma and Raynaud’s to receive support. It is open from 9am-7pm, 365 days a year. We are an accredited member of the Helplines Partnership and always conform to their standards of excellence. All of our volunteers have been affected by these conditions and will listen positively in order to help you with your particular enquiry.

Keep in Touch Support Service The Keep in Touch Support Service is a telephone-based service that is designed to provide support during times like these. You can receive a regular call from one of our volunteers, to talk about absolutely anything, and the service will be available for as long as this situation goes on. Our volunteer will arrange to make the call at an agreed time 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 active 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 see page 18 to read about the group in Leeds.

WELCOME TO THE LATEST EDITION OF SRUK NEWS

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.

I hope you have all been able to enjoy the summer sun, which has been glorious. However, it does feel as though we are on a bit of a rollercoaster ride. Last time I wrote, lockdown was easing and this time we are heading back into lockdowns and stricter measures. I am hoping the refreshed public service messaging of ‘Hands, Face, Space’ will ensure better adherence to the basics.

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 Although most face-to-face events remain on hold, the SRUK team and all of our incredible volunteers are still keeping busy, organising and taking part in various challenges as well as virtual events and get-togethers. There are now countless ways to get involved and support us without even leaving your home and every one of you really does make a difference. Please contact us for more information, or visit us at sruk.co.uk/get-involved/events/

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

At SRUK we recognise that for many of you, particularly those who have been shielding, a lot of uncertainty still remains; so we will continue to monitor the COVID-19 situation closely and keep our website up to date. For those of you living alone and with restrictions making it difficult to have regular contact with family and friends, we’ve launched ‘Keep In Touch’, a new telephone service offering a regular catch-up chat with one of our support volunteers. For more information, please call us on 020 3893 5998, email info@sruk.co.uk or visit us at sruk.co.uk/find-support/keeptouch-support-service/. Like many other charities, we were disappointed not to hold our regular events, like The London Marathon, My Prudential Ride London and a great many other half marathons, but we would like to say a massive thank you to everyone for being so resourceful and finding alternative ways to support SRUK and raise vital funds. We all need to make sure we take time out to look after ourselves and sometimes

small changes can make a big difference. In this edition, Lucy Reeve, Clinical Specialist Occupational Therapist, shares her advice to help us improve our wellbeing and quality of life. Please turn to page 15.

Contents

The potential of Tai Chi in reducing the symptoms of SSc

Over the last few months, the healthcare system has had to find ways to overcome the challenges of not being able to see patients in person. Telephone and video consultations have replaced many face-to-face medical appointments from primary care to specialist level. However, there is no ‘one size fits all’ and appropriate service delivery will depend on patient need, so we have some tips on how to make the most of any virtual appointment. Please see page 20

The Raynaud’s App

Coast to Coast for Caroline

Thank you for showing such amazing community spirit in supporting us and one another, whether that has been providing support via social media, online and by phone, or finding new ways to fundraise, we will only get through this by pulling together. These remain anxious times, so please do continue to call or email us if you have any questions or concerns. Very best wishes,

Sue

4. Your medical questions answered

12. SRUK Shop 15. Better days 18. Our Support Groups 20. The rise of telemedicine 23. The 2020 Virtual London Marathon 24. SRUK Christmas appeal 25. Fundraising ideas 26. Fundraising heroes

Your medical questions answered

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

Your medical questions answered

I have been told that cyclophosphamide is the only treatment available to me as I am already on mycophenolate. My quality of life is being severely compromised, and I feel that I am really struggling now. I have read that rituximab is a better alternative and I would like to explore this; however, my doctor was against it so I would welcome your advice.

It is difficult to give individual patient advice in this column, but your question makes some general points that I will try to address. Cyclophosphamide is a powerful drug that suppresses the immune system by reducing levels of white blood cells. At high doses it is used to treat cancers, especially of the white blood cells such as lymphoma; but at lower doses it has been shown to be an effective treatment for autoimmune or immune mediated diseases.

There is now robust evidence that cyclophosphamide can benefit lung fibrosis in systemic sclerosis and that it may help other severe complications of connective tissue disease such as heart or kidney inflammation. However, it is also quite toxic and so generally mycophenolate mofetil (MMF) is used first in systemic sclerosis because it seems to be as good as cyclophosphamide in many situations. For a patient who does not tolerate or benefit from MMF, changing to cyclophosphamide is often considered. Rituximab is a much more targeted drug and antibody that reduces levels of a specific white blood cell, the B lymphocyte. Some studies suggest that this may 4

be helpful in systemic sclerosis for skin or lung fibrosis, but more trials are needed. The RECITAL trial is a study just completed that will determine if rituximab is as good or even better than cyclophosphamide for lung fibrosis in connective tissue disease, including scleroderma. Once these results are published it may become more available, but at present it is used in scleroderma when there is inflammation in joints, muscles and blood vessels (vasculitis), where trial evidence is available.

capsules, Ginkgo Biloba and others. However, responses are variable, and you should discuss with your clinical team which ones might be appropriate and ensure that they are safe alongside any medication that you are prescribed. SRUK also have information on natural Raynaud’s treatments. Please visit sruk. co.uk/raynauds/raynauds-treatments/raynaudsnatural-therapies.

Are people with scleroderma more likely to develop osteoporosis? My GP has Is there a connection between systemic mentioned that he thinks my calcium Q sclerosis and developing hearing absorption may be affected by my GI situation, difficulties? I have noticed recently which has never been under control. I that I am frequently mis-hearing have also had steroids on and off. what people are saying and This feels like the last straw for struggling to hear the TV me, and I feel overwhelmed that “Are there any when it seems fine to this may be another thing to alternative therapies everyone else. I am 47 so deal with. I have been referred that are known to am I too young for this to for a scan but apparently the help Raynaud’s? I am be age-related? waiting times are longer due worried about having to COVID-19. The inner-ear and A more attacks now hearing are not Scleroderma, or systemic A that winter is usually affected in systemic sclerosis, does not directly approaching again.” sclerosis and so any cause osteoporosis but some problems need to be medications such as steroids may assessed and treated as for the be relevant, and the age and sex of general population. Occasionally, patients most likely to have small blood vessel damage might scleroderma (post-menopausal women), affect hearing in an autoimmune disease but means that many may develop thin bones that is rare and would require specialist (osteopenia) or osteoporosis. It is important to ensure that you have adequate treatment. If you have new or worsening problems, you should see your doctor and have Vitamin D and calcium in your diet and have the a formal hearing test that will reliably assess any DEXA scan that has been requested, when problem in the ear. possible. This will confirm if you have a risk of bone fracture and whether you should be prescribed osteoporosis treatment. Your GP will Are there any alternative therapies that Q be able to advise. are known to help Raynaud’s? I am worried about having more attacks now that winter is approaching again.

Raynaud’s phenomenon occurs when blood vessels in the extremities narrow excessively in response to cold temperatures or emotional stress. It can occur in otherwise healthy people, termed primary Raynaud’s, or associated with a medical condition such as systemic sclerosis. Drugs that reduce blood vessel spasms may relieve symptoms and reduce the frequency or severity of Raynaud’s attacks. But prescription drugs can have side effects and so many patients take supplements and find them helpful. These include anti-oxidant vitamins (e.g. Vitamin E, Vitamin C), fish oil

I would like some information please on Botox® treatments for the hands? What are the benefits? What would the treatment involve?

Botox® is the toxic chemical produced by botulism-causing bacteria that at high doses is extremely dangerous because it causes paralysis. Small amounts can reduce the contraction of muscles in the face and are used to treat wrinkles as a cosmetic procedure. It is also used medically to treat spasms in nerves and certain sites such as the bladder. It has been shown in clinical studies to help some patients with Raynaud’s phenomenon, and this may be

Doc Spot

due to reduced blood vessel spasm or reduced pain sensation. The benefit is usually temporary. It is available in some hospitals, but more evidence is needed before it is more widely used, and some clinical trials are planned for the future. For Raynaud’s, it is given by injection into the fingers, usually under a local anaesthetic as an outpatient procedure in hospital. I am a 68-year-old lady with Raynaud’s, Scleroderma and Sjogren’s Syndrome. I can walk a reasonable distance but as soon as I get to an incline my legs feel like lead, my heart races, I struggle for breath, sweat profusely and feel that if I don’t sit down I will pass out. This can also happen if I am standing for any length of time e.g. in a supermarket queue or if I carry anything, it does not have to be heavy. I just have to sit down for a few minutes to recover but am pale and shaky for several hours afterwards. Have you any idea what is causing this?

Although these symptoms could be due to scleroderma or Sjogren’s affecting the muscles or connective tissue, there is a long list of medical causes for these symptoms. For example, it is important that other possible causes are excluded such as more commonplace medical conditions causing poor blood supply to the legs or leading to undue stress on the heart or lungs during exercise. You should discuss this with your GP or clinical team, and they will advise on the need for further testing and possible treatments.

I had my first echo, PFT and CT thorax recently and am due back to my rheumatologist soon. I managed to see my CT report online and it says whilst there is no ILD, there is ‘very mild apical pleural thickening and scarring’. I would like to know if this requires treatment such as OFEV or immunosuppressants, or if we should ‘wait and see’, as I’m extremely worried about progression.

Research

Lung fibrosis (ILD) is common in systemic sclerosis and occurs in other connective tissue diseases. Often it is mild and does not progress and so may not need specific treatment. However, by performing tests such as lung function (PFT) and CT scans, the presence and severity of ILD can be determined and whether it is likely to be related to any associated disease like scleroderma. Your doctor can advise this.

In general, treatments such as immunosuppression with mycophenolate mofetil (MMF) are used first and then drugs such as nintedanib may be considered later. Recent trials have shown that nintedanib (also called OFEV®) slows progression of lung fibrosis in systemic sclerosis and that it can do this on top of standard treatment like MMF. However, it is encouraging that the scan report notes only mild scarring, and this may only require careful observation at this stage. Since the available treatments appear most effective in more progressive lung disease and all have possible side effects, that may be the best approach. I am sure that your clinical team will advise you further.

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

THE POTENTIAL OF TAI CHI IN REDUCING SYMPTOMS OF SYSTEMIC SCLEROSIS Exercise is essential for maintaining wellbeing, and Tai Chi has recently been shown to lead to physical improvements in some people with scleroderma. Researchers from Turkey have recently reported a possible link between Tai Chi and certain health benefits in people living with systemic sclerosis. Tai Chi is a well-known, traditional Chinese exercise method that has been practiced for many centuries. It is based on Chinese medicine and martial arts as a form of exercise and relaxation; and is believed to

About the study In this randomised-controlled trial, researchers from Turkey sought to understand if a Tai Chi-based exercise programme could lead to improvements in balance, sleep, fatigue, trunk endurance, anxiety and depression in people living with scleroderma. Twenty-eight people with SSc took part in the 10-week intervention. Half of the participants were randomised to the Tai Chi programme and the remainder into a home exercise group, with each session lasting for one hour. Evaluations of trunk endurance, balance, fatigue, anxiety, depression and sleep quality were performed at baseline and after 10 weeks, to look for changes to any of these components. Participants in the Tai Chi group were found to have improved trunk endurance, balance and

help protect and maintain both mental and physical wellbeing.

independence and the constant impact upon daily life.

During times like these, it is important to remain as physically active as possible. A consistent concern expressed across the SRUK community revolves around exercise, and how to balance fitness routines against the physical limitations of living with scleroderma. Systemic sclerosis (SSc) typically affects the skin, internal organs, joints and muscles, causing fatigue, sleep disturbances and joint pain. This can lead to anxiety and depression due to reduced

The benefits of Tai Chi in certain rheumatologic conditions have already been demonstrated; and it is also linked to improved muscle strength and balance, especially in the elderly. Core body strength or trunk endurance is recognised as a crucial element for dayto-day activities and is also associated with reduced fatigue; with several Tai Chi forms incorporating trunk rotations because of this.

sleep quality, alongside lower levels of anxiety and depression. In comparison, the other group experienced benefits only in trunk endurance and sleep quality. Overall, the Tai Chi programme was demonstrated to be more beneficial than the home exercise plan. This does seem like a positive development, although it is important to find the right regime for you as an individual; since what works for one person may be less effective for another. The value of a holistic approach when considering a complex and chronic condition such as SSc cannot be underestimated, with the best outcomes often seen in people who receive medication in combination with nonpharmacological therapies such as physiotherapy. Common symptoms such as low sleep quality and fatigue can also be linked to mental health issues

including depression and anxiety, so it is important to look after these areas as well, and gentle exercise in whatever form works best can make a real difference. As ever, always talk to your doctor before trying anything new. And finally, if you have tried Tai Chi or you have any tips or ideas about overcoming barriers to exercise, then please let us know!

Reference: Cetin, S., Calik, B., Ayan, A., 2020. Investigation of the effectiveness of Tai Chi exercise program in patients with scleroderma: A randomised controlled study. Complementary Therapies in Clinical Practice, 40, p.101181.

Research

Personal stories

Sue and Lee have raised over £3,000 for SRUK and had a life-changing experience along the way. Their amazing efforts will help us continue to support people with Scleroderma and Raynaud’s.

THE RAYNAUD’S APP the story so far SRUK has developed a Raynaud’s App, to capture Raynaud’s attacks and key symptoms. The information will help in the early detection of scleroderma and the app is now in the testing phase.

COAST TO COAST FOR CAROLINE

SRUK is working with key industry partners to develop and test a Raynaud’s App, to capture vital data on all aspects of Raynaud’s attacks and key symptoms. The information gathered will be used to help advance the early detection of scleroderma. The Raynaud’s App has now reached the testing phase, and is ready to be piloted amongst study participants.

AN INCREDIBLE JOURNEY By Sue Edser

Sue Edser and her nephew Lee have raised over £3,000 for SRUK, by taking on the challenge of walking Wainwright’s Coast to Coast path. This mostly un-signposted route in Northern England took them from St Bee’s in Cumbria all the way to Robin Hood’s Bay in North Yorkshire: a distance of around 200 miles. They did this in support of Caroline, Lee’s mum and Sue’s sister, who has scleroderma. This is their incredible story.

Imagine a world where the power of Artificial Intelligence (A.I.) could be harnessed, helping clinicians identify Raynaud’s patients at risk of developing scleroderma? Well, a new and exciting SRUK-funded research project is investigating whether this ‘sci-fi’ dream could become a reality. Enabling the early detection of scleroderma is a key area of SRUK’s Research Strategy, since identifying those at risk can enable faster clinical intervention before the condition progresses further. This is a long-term goal of The Raynaud’s App and Rare Disease Platform Research Project. The project arose through a successful SRUK application to Microsoft’s ‘AI for Good’ Fund. We gratefully received a £6,500 investment from Microsoft and invaluable support through a partnership with D4T4, a company whose technical expertise provided the ‘know-how’ to develop this concept. The partnership generated the ‘Rare Disease Platform,’ a data repository to gather and hold clinical information and patient-reported data (such as frequency and severity of attacks) to further our understanding of the progression of Raynaud’s and any early predictors of scleroderma. But how best to collect this data? The idea of a ‘Raynaud’s App’ was born. This ground-breaking initiative leverages key expertise from across all sectors, and our team has grown to include Dr Francesco Del Galdo from The University of Leeds, who leads the 8

‘STRIKE’ Study (Stratification for Risk of Progression in Scleroderma), and ‘Healthbit’, a company experienced in creating health apps. Version One of the App is now ready for research use, and 150 STRIKE Study participants will be invited to install and use this to record day-to-day symptom severity. The data will be held securely in the Rare Disease Platform which could eventually hold clinical data. This combined dataset could allow researchers and clinicians to gain a greater understanding of Raynaud’s progression and discover the indicators of scleroderma. Once this pilot study is completed, it will be evaluated according to success criteria including data The study continues, quality and the so look out for updates capacity of the platform on how the project is to hold large progressing, on volumes of our website and across data.

our social media.

Caroline’s story Caroline, aged 54, was diagnosed with Raynaud’s in autumn 2009 and the following spring, with scleroderma. In 2011, Caroline was told she also had Sjogren’s syndrome and then in 2012, lupus. She had worked as a customer assistant, but the cycle of excruciating pain, debilitating fatigue and endless hospital appointments

was untenable with a fulltime job. Ten years on from diagnosis, Caroline has had to adapt to a different lifestyle, pacing herself so she doesn’t become overwhelmed with fatigue, unable to make future commitments and managing the scleroderma flare-ups when they come. Despite this, Caroline remains incredibly positive and focused on helping others. She is a joint co-ordinator of an initiative producing plastic roll mats for homeless people, an avid donator and occasional recipient of items on free recycling sites and is always there to support those close to her. Life isn’t how Caroline imagined it would be, but research has enabled advances in medications and treatments, so living with the symptoms of her conditions can be managed, alongside the vital support she receives from the online community.

Lee’s story Lee, 27, is Caroline’s son. He joined The Royal Marines at 16 and left two years ago. He starts a new chapter in his life this autumn, undertaking a degree at the University of Manchester. His time in The Royal Marines helped him develop the skills, experience and attitude to complete Wainwright’s Coast to Coast walk.

Personal stories

night and were deeply touched when we found out my eldest sister Rosie had paid for our accommodation.

Sue’s story Sue, 49, is Caroline’s sister. She was a manager at a mental health charity and a university, before having a gap year at 40. During this time she travelled South East Asia and Nepal, walked the South West Coast Path for The Raynaud’s and Scleroderma Association (RSA), and volunteered for a New Forest-based charity, supporting adults with learning disabilities. She has worked for this organisation for eight years.

Our Challenge – Wainwright’s Coast to Coast Path Last autumn, my nephew Lee mentioned he wanted to walk Wainwright’s Coast to Coast path and raise money for SRUK, to show his support for his mum, Caroline. It starts in St Bee’s, Cumbria and travels approximately 200 miles across three national parks before finishing on the east coast of England in Robin Hood’s Bay, North Yorkshire. On Monday 24 August 2020, after several months of planning and training, we set off from Southampton train station and eight hours later, arrived at our starting point on the west coast. As tradition dictates, we dipped our feet in the Irish Sea, collected a pebble and with our 20kg rucksacks, we were off!

During the following few days, we encountered the beautiful Ennerdale Water, had lunch at remote locations such as Black Sail Youth Hostel and enjoyed hours of easy valley strolls, nestled amongst the mountains. We were also tested to our limits, including scrambling over boulders up to Lining Crag and descending the steep slope from Kidsty Pike, which would make any rambler’s knees quiver. Our feet became tender from the constant pressure, but we took care of ‘hot spots’ as soon as they appeared and so avoided blisters most of the time. Lee was in charge of navigation and he easily found our route, despite the limited signposts and vanishing paths. The weather was awful at times, which meant we had to battle 35mph winds near Grisedale Tarn and cross countless swollen streams. We also had mental challenges, such as when we arrived exhausted in Grasmere and couldn’t find anywhere to camp. The fluffy green fields looked enticing, but we had been warned against wild camping in the area. I suggested to Lee that we ask the farmer and in a moment of strange coincidence, a tractor pulled into the farmyard. He was more than happy for us to camp in a nearby field, refusing to accept any payment and instead said to return the good deed to someone else. The next stage of the walk was across the M6 and into the Yorkshire Dales National Park. The scenery changed to a maze of sheep-filled fields, flowering heather and stone walls. Our longest day was 22 miles, taking 11 hours and ending at a pub with an inspiring landlord. He gave our camping money back to add to the fundraising pot, provided free beds for the night and in the morning, offered snacks for our journey. We had a walking companion with us for a few days whose phone had broken, and he gave her a spare one, so that she was safe. When I asked

him why he was being so kind, he said “It’s being human, isn’t it?” This was a true lesson in being kind, but then be even kinder. We saw the Nine Standards, which are large, standing stones with panoramic views of the Yorkshire countryside, traversed extensive peat bogs and reached Keld, the official halfway point of the walk. The following few days we hugged the River Swale, occasionally climbing higher to see tiny lime-green fields, resembling the rice fields in South East Asia. On a rainy night, another landlord offered us free accommodation and gave the money for our evening meal towards our fundraising. The generosity and friendliness we experienced was constantly surprising and several cyclists stopped to talk to us and even a car driver slowed down beside us and chatted as we carried on walking. On our final stretch of Wainwright’s Coast to Coast walk, we entered the North York Moors National Park and joined the Cleveland Way. The paths were often steep, but we were rewarded with breath-taking views of fields

between us and me half-a and blue skies that went on stone-lighter, we had done it! forever. We had a scramble over the Wain Stones and Of course, the actual walk followed the Esk Valley Walk was only one part of the until we reached home for the journey. We put daily updates night, camping on the highest and photos on the Facebook point of the moors. Our last group ‘Coast to Coast for full day of walking Caroline’, to share was filled with our experiences moorland, with others. Lee and I talked to as bogs and Caroline many people as we could jungle-like uploaded a about the purpose of woods, ‘Fact of the the walk and handed and we Day’ each them business cards with were so morning, details about the group, excited which the charity and how to to get helped raise donate. We had hoped to our first awareness raise £10 per mile and by sight of about the fourth day, we the North Raynaud’s and had achieved that. Sea! On the Scleroderma. final morning, Everyone was so we saw a cave, generous, including visited the best some people donating waterfall yet and stood inside multiple times and a hermitage. Literally skipping to date, we have raised just the last four miles along the over £3,000. coast path, we arrived at Lee and I know that money Robin Hood’s Bay, greeted spent on research has helped by Caroline and her husband, to slow down the progression Martyn. We all walked to the of Caroline’s illness and shore and Lee and I paddled retained her quality of life. We our feet in the North Sea loved doing this walk, even and threw the stones we had the hard and painful bits, but carried from St. Bee’s into the we did this walk for a more water. On Monday 7 September important reason: because we 2020, 15 days after we had love Caroline. started, with three little blisters

The first part of our journey was through the Lake District National Park, where we had an eventful first night on top of Dent Hill in the middle of Storm Francis. We retreated to a pub on the second 10

Shop

SRUK SHOP Christmas is on the way, so it’s a good time to trade your old for new and buy some stocking fillers for others. You’ll find some new products and some old favourites at srukshop.co.uk this winter. reused once opened.

1 box £37.99 (includes 40 warmers)

1 pack £4.99

HERE IS OUR SELECTION OF SRUK CHRISTMAS CARDS AVAILABLE FOR PURCHASE THIS YEAR, EACH PACK CONTAINS 10 CARDS. “Winter Woodland”©

New 2020 Design

(includes 4 warmers)

Face mask Get your hands on our new re-usable face masks! This maching washable covering is double-layered and made with a soft cotton lining for comfort and features elasticated ear loops. One size

£5.50

12% silver long 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. The socks will keep your feet much warmer when compared to conventional socks. 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/m/l/xl

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 12

An original painting by Jane Knights, Artist and Calligrapher based in Norfolk. Jane has Raynaud’s and has kindly given her permission to use this artwork in order to raise funds for SRUK.

Pack of 10 = £4.99

Ladies Slippers Warm up cold feet with a cosy pair of ladies’ slippers, with handy removable heat pads. Pop the heat pads in the microwave, slip them in the slipper tops and enjoy that warm feeling. You’ll have toasty toes in no time at all.

You can order your SRUK Christmas cards and gift wrap today by heading to our website www.srukshop.co.uk or calling us on 0203 893 5998.

Enjoy an exclusive 10% discount off your online order using the code MEMBER20

UK 5 or 6

£27.00

£14.99

Tis the Season

Snowman

Partridge

Sledging in the winter

Winter scene

Robin on a snowy post

Snuggle up blanket Hand warmers individual pack/box These handy warmers can be quickly activated for instant warmth whenever you are out and about. Just open the packet for Seven hours of constant heat. Please note these are disposable and cannot be

Relax with a Heat Holders premium fleece blanketperfect for wrapping up warmly on those cold winter nights. With a 1.4 tog rating, its generous size and incredible softness make it a must-have item for peaceful days at home.

£24.99

Shop

Self care

Christmas items

Cost

Qty

Size

Christmas Cards: Winter Woodland

£4.99

Christmas Cards: Partridge

£3.99

Christmas Cards: Tis the Season

£3.99

Christmas Cards: Robin on a snowy post

£3.99

Christmas Cards: Snowman

£3.99

Christmas Cards: Sledging in the winter

£2.99

Christmas Cards: Winter Scene

£3.99

Snuggle Up Blanket

£25.00

Ladies’ Slippers (S or M)

£27.00

UK 5 or 6

Re-usable Face Mask

£5.50

One size

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

£23.50

Mycoal Hand Warmers (4 packs)

£4.99

Colour

SOMETIMES, SMALL CHANGES CAN MAKE A BIG DIFFERENCE By Lucy Reeve Cranberry

Stocking fillers

Black

Silver Socks & Gloves 8% Gloves Per Pair (XS or S-M or L/XL)

£12.50

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

£10.99

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

£12.99

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

£14.99

Postage and packing

£2.99

Postage and packaging for multiple items

£1.00 for more than 3 items

Mask only

£0.77

Total Order Total cost of goods Postage & Packaging To include a donation please add here Total enclosed Name

During these unprecedented times, many people have been shielding, and life looks very different to how it used to be. Living a full and meaningful life is central to our wellbeing and to keep well, sometimes you need to become your own therapist! What we do every day has a massive impact on our health. When you raise the quality of each day, you improve your quality of life.

Looking after yourself

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Lucy Reeve is a Clinical Specialist Occupational Therapist, who has worked for the NHS for 26 years in Rheumatology and Pain Management. She also has scleroderma herself, so she fully understands the impact of this condition on daily life. Here, Lucy looks at some of the small, positive changes that can make a big difference to wellbeing and quality of life.

Postage & Packing Costs

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

BETTER DAYS

Please return to: Bride House, 18 – 20 Bride Lane, London EC4Y 8EE Get your order form to us by 14 December to receive it in time for Christmas

Start by learning more about yourself. Keep a daily journal of your typical symptoms, when they occur, what helps and what aggravates things. Understanding what is ‘normal’ for you will help you to manage your situation. To look after ourselves we need to start small; so look at a typical day, focussing on each area of your life. Include home environment, relationships,

work, hobbies, diet, sleep and physical activity. Many people find it helpful to write things down; and making notes about your pain or energy levels will help to show how these are affected by what you do. Ask yourself: • What does a typical day look like? What is your current routine? • What do you spend your time doing? What are your priorities? • What are your exercise habits? • What is your sleep pattern like? • Do you have periods of relaxation? At the end of each day, consider the following: • What worked? • What didn’t work? • What did I learn, and what can I do differently tomorrow as a result? Reflect on the content of your days and see if you can make any changes. With continuous practice and experimentation, you can develop habits that become the building blocks of a better life.

Managing daily activities Planning and pacing Living with health issues can make daily tasks more

challenging. Sometimes we stop doing things because of pain, fatigue, or the fear of making things worse. This may help in the short term, but if you do not stay active then you will quickly lose strength, stamina and flexibility, leading to more problems in the long term. Often, we wait until we feel well, and then ‘overdo it,’ sometimes needing several days to recover. This pattern is called ‘Boom and Bust’. Aim instead for consistent daily activity levels - you will achieve much more in the long term. Do a bit more on your bad days, and a bit less on your good days. Crucially, always stop before you need to - if you wait for the pain or exhaustion, you have done too much. Plan out your days and weeks to involve a variety of tasks, with regular changes of position. Try to vary your activities and change your posture regularly. Set a reminder on your phone to change task or position every 15 minutes, even just for a stretch. If you are doing something and you still feel ok, then the natural tendency is to carry on, at the risk of overdoing it. Pace yourself, breaking tasks into manageable segments. Do not vacuum the whole house - do one room per day. Leave the ironing board up and do a

Self care

few items at a time. Exercise in bitesize chunks, such as walking on the spot whilst waiting for the kettle to boil. Having a daily routine that organises getting up, mealtimes, exercise, rest times, periods of activity and night times is extremely helpful for your body and helps you to feel more in control. Include regular rest breaks throughout your day, so you can constantly recharge your battery! If you have a ‘best time’ of the day, this may also be the time for more challenging tasks, that require more energy or concentration. Prioritise Nobody has an endless supply of time or energy, so no-one can do everything. When you have scleroderma your supplies are much more limited than normal. You are working with a reduced ‘budget’ so you need to spend it wisely. Examine your ‘To Do List’ to see how you are spending your time. Are certain things not really important? Are there things that somebody else could or should do? Are you spending all your energy on work, leaving none for yourself and your family? What will you do and what can you dump or delegate? Many people are perfectionists with high expectations about how things should be done; others are people-pleasers who find it hard to say ‘no’. Letting go of the ‘old me’ who used to try to do everything is hard; but see if you can make some small changes to make your life easier. Environment and equipment Does your environment make life easier or more difficult? Is it organised, and easy to clean 16

Self care

Relax

and maintain? Are essential items accessible and at the right height for when you need them? Are the chairs you sit on and the bed you sleep on suitable for your needs? If the answer is no, think about making some changes. If there are tasks that you are finding difficult, there might be some equipment or gadgets that could help. Technology can make a big difference, for example, the type of kettle or food processor that we use can make things easier if we choose wisely. Visit The Disabled Living Foundation for more information, at www.dlf.org.uk/

Set aside some time every day for relaxation. Find a technique that works for you – there are plenty of books, apps and free resources available.

Have fun When we are pushed for time, the things that we enjoy often slip to the bottom of the pile. With limited energy it can take all our efforts to do the bare minimum. We often end up skipping our hobbies and social engagements altogether. However, these are the things that actually give us energy and lift our mood, so losing them comes at a cost. Make a list of the things that give you pleasure or make you happy, and try to fit more of these things into your life! Make a ‘Joy Jar’

Keep moving However you look at it, exercise helps. As well as boosting your physical health, it also increases the production of feel-good endorphins (our natural painkillers), helps burn off stress chemicals and relieves anxiety. Research has found that half-an-hour of low intensity exercise three-to-five times a week can help boost mood, energy and mental alertness.

A ‘Joy Jar’ is a collection of things that make you feel good. Each time you find something that lifts your mood or makes you feel grateful, write it down and stick it in the jar. A telephone call with a friend, flowers in your garden, a cheerful hello from a neighbour...anything and everything! Then, when you are having a bad day, you can read through some of these things. Even when life is tough, there are still joyful moments out there.

We might become upset, angry or frustrated about our health and this creates distressing thoughts and feelings that are also hard to deal with.

If you don’t want to use a specific relaxation technique, simply make time for yourself. Relaxation calms your mind and your body, reducing pain and muscle tension and improving sleep quality, so it is well worth a try. Write it down Research shows that writing down our thoughts and feelings helps us to process them and reduces our stress and anxiety. It also helps us to gain perspective on the situation and to find possible solutions to our problems. You could record your symptoms, work through specific problems or just write about how you are feeling. This gets all those thoughts out of your head and onto paper so your mind feels less busy, and this in itself is very helpful. Accepting ‘It is as it is’ It is human nature to fight against certain situations.

There are many aspects of life that we cannot change. Learning to work with ‘what is’, can be extremely difficult. Sometimes we get trapped in circular thinking, constantly asking ‘Why?’ – ‘why has this happened to me?’ The most helpful question to ask is: ‘What now?’ What can you do now that would help? What is the most useful action you could take? Think about what you can do to help.

Be kind to yourself Finally, if you want to really help yourself then try developing some selfcompassion. Many people give themselves a hard time, always criticising themselves. Do you behave this way to your friends? You are the most important person in your life. When you have health problems you need support and encouragement from everyone, especially yourself! Treat yourself the way you would treat your best friend. If you would support them in troubled times, then do the same for yourself. Wouldn’t it be better to travel through life with your best friend rather than your worst enemy? Lucy Reeve presented the highly-informative SRUK Facebook Live Q&A on Occupational Therapy. Please visit www.facebook.com/ WeAreSRUK/videos/ 267308844418393/

If you would like to discuss a possible referral to an Occupational Therapist, please contact your GP or nurse specialist for more information.

Keep it simple with any activity that gets you moving, be it dancing, walking the dog or just doing housework to music.

Awareness

OUR SUPPORT GROUPS We have Support Groups throughout the UK, which are a wonderful way to enable people affected by these conditions to find information and ongoing support in their local area. Local Support Groups enable people to connect with others in a similar situation. They provide a safe space to talk about different aspects of living with Scleroderma and Raynauds. Each group is run by a dedicated support leader who maintains contact with all of the members. All our leaders are volunteers who have some experience of these conditions themselves. Before the COVID-19 pandemic struck, our Support Groups were holding regular, faceto-face meetings within their local areas, with many also providing email or online support, depending on member needs.

THE SRUK SUPPORT GROUP IN LEEDS Chris O’hora leads the SRUK Support Group in Leeds. Chris, 53, is originally from the west coast of Ireland, and has lived in Leeds for the past 35 years. He has worked as a site manager for a civil engineering company for over 30 years. Chris lives with his wife Clare and they have three grown-up children. He formed the Support Group in Leeds in 2017.

Awareness

Our local Support Groups are designed to offer ongoing support at local level to anyone who is affected by Scleroderma and Raynaud’s, as well as to their partners, families and friends.

During these unprecedented times, group leaders have quickly found new ways to keep everyone connected; with many groups now holding meetings and events online, which will continue until face-to-face meetings can safely resume. In this edition, we look at the story from Leeds.

I was diagnosed with systemic diffuse scleroderma in 2014, and I am under the great care of Dr Francesco Del Galdo and his team at Chapel Allerton Hospital. Thankfully, I do not have any organ involvement and the medication has reversed the skin thickening on my hands and lower arms by around 70%. I am aware that I am one of the fortunate ones, and I think that it is important to share the positive outcomes.

organised by SRUK and run by a Canadian organisation called The Scleroderma Patient Intervention Network (SPIN), with participants from all over the world. This was a highly valuable experience, and it was incredibly informative and interesting to listen to and share views and ideas with other Support Group leaders.

Since lockdown began, we have organised Zoom meetings on a weekly basis. Most of us Back in 2017, Queenie, who was our were shielding during this time, so specialist nurse at the time, we thought that we would try organised a focus group to to provide a platform to help discuss how a new Support “The Leeds Support relieve the boredom. We just Group could be put together Group has been great during have a bit of a natter and and what this might look the last few months. The finish off with a quiz, with like. We then formed a newsletter has given us information family members joining in. committee and I was from our consultant which I We still do this twice-aelected as the Chair of wouldn’t have received any other way, month. We have a mailing the Group. and the Zoom meetings have been list of around 100 people, good - it has been helpful to We then began to hold and we send the Zoom meet others with the same Support Group sessions invite out via email. We are condition and share every six-to-eight weeks in very happy for people outside support and updates.” GB community halls, with expert our local area to be a part of speakers whenever we could these sessions, so if you would like find them. Attendance varied for to join our mailing list then please these sessions, although the biggest get in touch. crowd by far was for a carvery lunch that We also send out a newsletter to everyone was held to say thank you and goodbye to the on our mailing list every two months or so. afore-mentioned specialist nurse Queenie, who The content varies, and we usually get lots of was moving on. relevant information from the team at Chapel Our aim in running this group is to support and Allerton Hospital as well as from SRUK; and we provide an outlet for people with scleroderma also include a list of useful numbers and email to come together and share their experiences addresses as well. The newsletter is available to with other, like-minded people. We also inform everyone, so do please get in touch if you would the group members about upcoming events and like to be added to our mailing list. news items related to scleroderma, and advocate We are forever striving to improve our group to doctors at local level. and encourage members to suggest ways that I find it very rewarding to be a part of this group we can do this. I am really looking forward to the and I enjoy spending time with people who are future when all scleroderma Support Groups are living with the same condition; it really does firmly part of the SRUK umbrella. feel like we are a family. Now that SRUK is in the process of bringing all the Support Groups under We currently run 12 Support Groups across the SRUK umbrella, I have had the pleasure of various locations, but we are always looking communicating with the other leaders around to increase our coverage to enable more the country, and it is great to share and learn people to access this level of support. from one another. If you would like any more information or if you If you are considering starting up a new Support would like to start your own Support Group, Group, I would recommend having some core please call us on 020 3893 5998 or email people around you to help out. SRUK will help info@sruk.co.uk. you with the set-up and will support you on an ongoing basis. Just before the pandemic, I attended a virtual training course for Support Group leaders, 19

Personal stories

THE RISE OF TELEMEDICINE Telephone and video consultations have replaced many face-to-face medical appointments during recent months, from primary care to specialist level. A significant sign of these unprecedented times, telemedicine has had to evolve quickly and may well be here to stay. But can it work? ‘Telemedicine’ means using telecommunications and information technology to provide healthcare and medical assessments remotely, as well as to deliver therapeutic interventions. This now forms part of the wider measures currently in place to help control the spread of coronavirus, by limiting person-to-person contact where possible. In practical terms, it enables doctors’ appointments and specialist consultations to take place via telephone or video call instead of face-to-face.

Remote consultations on the rise Remote healthcare accelerated dramatically when coronavirus struck and by now, most of us have some experience of this. This may look like a lot of change within a short timeframe, however telemedicine is not a new

concept. It was around before COVID-19, and at primary care level in particular, telephone appointments were regularly available long before we ever heard of coronavirus. Data from Healthwatch during 2019 suggests that many people were already open to increasing the use of virtual healthcare, especially those within remote rural communities, although it was identified that this would not suit

everyone, and that overall, technology was less important than in-person care1. By February 2020, an estimated 14% of GP appointments were carried out remotely. This rose to 48% by May and had climbed to 85% by midsummer, as lockdown eased.2 The infrastructure has had to adapt almost overnight to deliver as complete a service as possible within unprecedented conditions; and its millions of users have also had to accept these changes and work with them.

Virtual healthcare in the real world – one size fits all? Remote healthcare can sometimes represent a convenient alternative. It is less time-consuming, with no travel times or costs and no need for waiting rooms. With a condition like scleroderma, cutting down on hospital trips could potentially have considerable 20

benefits. Sometimes, a faceto-face appointment will still be necessary and must remain available. On one hand, these changes present the opportunity to develop and improve service delivery and optimise patient choice. On the other, change often comes with uncertainty, and it may take a little time to get it right. When a consultation takes place over the phone, this does not mean that care should be compromised: and the outcome should be the same as with a traditional

appointment. Although it has quickly become clear that healthcare can potentially be delivered in many different ways, what will never change is that the welfare of patients must remain paramount. Just as no two people are the same, there can never be one single, uniform policy for everyone; and this crucial key message applies to providers and patients alike. In our ‘new normal,’ an ideal scenario will strike a balance, with virtual appointments offered (but not imposed), in

appropriate cases. There will always be certain services that cannot be delivered remotely, such as physical examinations and diagnostic tests. In practice, most people will need to access different services in different ways, ultimately receiving a combination of virtual and in-person care. As ever, the circumstances, needs and preferences of the individual will be the key to effective service delivery.

SARAH’S STORY Sarah Cox has systemic sclerosis and has been a regular NHS patient for nearly 20 years. Sarah is married with an 11-year-old son, and she is also a patient advocate. Before lockdown started, Sarah delivered the following presentation to NBT NHS Trust, making the case for virtual appointments from a patient perspective. I have been an extremely frequent patient of the NHS for nearly 20 years. In my teens I was diagnosed with this rare condition that affects many systems of the body. I have undergone numerous life-altering operations, and am under the care of many consultants, so I spend a considerable amount of time at the hospital. Attending these appointments consumes a lot of my time. To improve both the quality of my life, and my family life, I would like this to change. Last year I attended 84 outpatient appointments. Including travel times, parking issues and clinic waiting times, each appointment took at least four hours. I can often spend the whole day there, and it is not unusual to have multiple appointments on the same day. This impacts upon many aspects of my life, the most important one being my family.

I am married and have an 11-year-old-son. Approximately twice-a-week, my husband has to miss work to do the school run. If an appointment falls before 10am or after 1pm, I am unable to confidently carry out my parenting duties as well. My mother and father-in-law are remarkable people and without their support, my husband would not be able to commit enough time to his job. As most parents will appreciate, I try to protect my son from the harsh reality that comes with managing a progressive and serious condition. This is difficult when my need to be at the hospital often highlights my ill-health. My son is acutely aware of how ill I am because I am so frequently absent. It disrupts our family life because ‘Mummy has had to go to hospital again’. The significant emotional impact this has on him is hard to put into words, but it has affected him deeply. 21

Personal stories

It is my dream to set up my own business working as a disability consultant and business advisor, and I continue to study and work towards this. However, there is currently no reasonable prospect of this happening, due to the time I spend at the hospital. I do accept that I will still need to attend appointments, but any reduction in the frequency would allow me a better chance of realising my ambitions. As it stands, I have little prospect of gaining employment. No employer could realistically allow this much time off; it equates to over 30% of working days at the hospital. If I could reduce this by just 20%, it would potentially free up 17 hospital visits each year. That is the difference between having a viable prospect of starting a successful career or continuing to remain unemployed. The impact of reducing my need to attend hospital will also enhance my quality of life. My prognosis, though not imminently terminal, is expected to be limited. Quite simply, I can think of many places I would rather be, and I am conscious that the time would be well spent at home with my family and friends, doing something I love or even working! I would like to include a patient perception of something I feel affects the majority of outpatients, as well as a remedy. I find parking relentlessly difficult, as there are not enough parking spaces for patient and visitor demand. I

Fundraising

sometimes use an electric wheelchair and I have a blue disabled badge. Despite this, parking is often a stressful and long ordeal. Any reduction in physical appointments will reduce demand on the travel infrastructure and benefit the remaining patients and visitors to the hospital. The impact that a stressful parking experience can have on top of an outpatient appointment cannot be underestimated, and I consider my mental health to be fundamental to supporting my physical wellbeing. Sometimes I have to attend follow-up appointments where no physical examination is necessary. It would be helpful if this was identified when the appointment is generated, giving me the option of a virtual appointment instead. Each individual patient journey is unique. It is important to deliver the best experience to every patient, every time. This begins with giving people the freedom to choose where and how appointments are conducted. This allows everyone a voice to choose the best option, based on their preferences and the logistics of attending the hospital or not. It also has the potential to improve the parking and transport infrastructure within hospital settings and is highly likely to reduce the number of missed appointments. As a starting point, this will allow patient experiences to improve, be it the first outpatient appointment, or the 85th.

GETTING THE MOST FROM A VIRTUAL APPOINTMENT • Let the service provider know how you would like the appointment to take place, and if you would prefer telephone or video calling. • Inform the clinic in advance if you need a faceto-face appointment instead. • It is important to have the space to talk in private when you take the call, which may show as No Caller ID, or as a withheld number. • Think about your appointment goals in advance, what you need to get from it and the desired outcome. • Prepare for the appointment in exactly the same way as before and make notes to remind yourself at the time. What do you need to tell them? What do you need to know? 22

• Make a list of all your symptoms and medications to use during the appointment. • Consider your current symptoms and what your own ‘normal’ looks like. Have things become better or worse since your last appointment?

THE 2020 VIRTUAL LONDON MARATHON It might not have been possible for the physical event to go ahead this year, but seven incredible fundraisers took part in the Virtual London Marathon on 4 October 2020. Each of our amazing runners ran their own route that was local to where they live in the UK. Months of training and hard work culminated in this 26.2-mile run, with a specially-designed app to help them recreate the race day atmosphere. They had to battle against adverse weather conditions with heavy wind and rain on the day, however they all rose to the challenge and we are incredibly grateful!

A huge SRUK congratulations to Connie, Ella, Julie, Nicola, Stacey, Wayne and Zoe! “The marathon went amazingly, we completed it in five hours and 26 minutes. We had the best day, it was so wet and cold but we pushed through lots of barriers together. We began flagging again at around 30km, and suddenly our dad turned up from nowhere in his running gear and did four miles with us, it was the most amazing moment and he really got us going again!

I feel so emotional just thinking about the day, when we got to the finish line our families were waiting for us and there were two special people missing who we have lost in the last year, my mother-in-law who we lost to scleroderma and our grandad who we recently lost in July. Seeing everyone’s faces cheering us on was so special, and I am immensely proud of my sister who always said she would never be able to run a marathon! I felt my heart could burst with pride when we hit our finish line. Thank you so much for giving us this opportunity, although it wasn’t London it was so special for us to run together at such a hard time in our lives. And now we can’t wait for London 2022!” Connie Vallis and Stacey Halford Could you run for SRUK, or know someone that would like to? We currently have places available to join #TeamSRUK in 2022! For more information, please email fundraising@sruk.co.uk or call us on 020 3893 5998.

• Do not be afraid to use phrases, such as “Please explain…” or “I did not understand…” if you need clarification. Ask the clinician to repeat anything that you may have missed. • At the end of the appointment, ask what the outcome will be, and what will happen next.

Reference: “The Doctor Will Zoom You Now” Healthwatch; National Voices; Traverse, 2020 23

Christmas appeal

CHRISTMAS APPEAL

Please Donate!

When you live with Scleroderma and Raynaud’s there is no such thing as a normal Christmas.

ebbie

We know that for you Christmas can be hard – with or without a pandemic. From dealing with painful flare-ups to battling fatigue. At SRUK we are committed to helping you through that at Christmas and throughout the year.

“Christmas is very painful without Debbie. She loved everything from wrapping presents and decorating the tree to writing family Christmas cards and helping me with the outside lights. Debbie died from scleroderma on 16th October 2019 – she was my wife, my soulmate, and my best friend - every day I miss her so much.

I want to raise awareness about the devastating impact of scleroderma and to help fight for better diagnosis, treatments and hopefully a cure. Debbie was so kind and loving, the sort of person that would give you

h Robert wit

her last penny and it feels so right to be raising awareness in her memory.” Your donation this Christmas is needed now more than ever, as we all try to navigate COVID-19. With your help we can make sure we provide information and support via our Helpline and Keep in Touch service, and continue with our research to find new treatments, improved diagnosis and ultimately a cure..

You are invited to take part in our virtual quiz with a difference! Expect festive fun with some unusual rounds, some surprises along the way and plenty of opportunities to showcase your quiz skills! Look out for more details on our website and social media or contact us to register your interest.

Local Santa Run Don your Santa hat and run, walk or jog in your garden or local area, set up your online fundraising page and ask all your friends to sponsor you. Christmas lights Decorate your house with as many lights as possible and you’ll be the talk of the town – ask people for a donation in appreciation of brightening up their day!

Increase the value of your gift by 25%

I enclose my donation of: £ I enclose a cheque payable to Scleroderma and Raynaud’s UK Please debit my credit/debit card (Maestro, Visa or Mastercard) Card No Security code Date

Please treat all donations I make now, in the future, or have made to SRUK for the past 4 years as Gift Aid donations until further notice. I am a UK taxpayer and understand that if I pay less income Tax and/or Capital Gains Tax in the current tax year than the amount of Gift Aid claimed on all my donations it is my responsibility to pay any difference. I understand that SRUK will reclaim 25p of tax on every £1 that I have given.

Please return to: SRUK, Bride House, 18-20 Bride Lane, London, EC4Y 8EE

SRUK PRESENTS: THE BIG FESTIVE QUIZ

Donate your Christmas Party Cancelled your Christmas party this year? Donate the party fund to SRUK instead!

Mince Pie Bake Off Have a virtual bake off with your friends and family

Address

Signature

We can’t answer that, but here are some ideas to help you have some festive fundraising fun!

Name (full name)

We know that Christmas this year may look a bit different, will the rule of six still be in force, will there be more local lockdowns, will we have a Zoom Christmas party?

When Debbie was diagnosed, we had never heard of scleroderma – but it is such an awful disease and not enough is known about it. The condition attacked Debbie’s lungs and it quickly destroyed her body – taking her away from me piece by piece.

Donate online: sruk.co.uk/donate call 020 3893 5998 or send a donation using the form below

Exp date

FESTIVE FUNDRAISING ACTIVITIES

This Christmas, Robert will be remembering his wife Debbie who died from scleroderma aged 46.

ife D

ROBERT’S STORY

FUNDRAISING IDEAS FOR CHRISTMAS

*NB – as our staff are currently working from home please do bear in mind that we may take a little longer to open your post and send you an acknowledgement, but we are very grateful for your support.

Contact our team to find out more about getting involved and to order your fundraising pack. Email: Fundraising@sruk.co.uk Call: 020 3893 5993 Website: sruk.co.uk/get

involved

Fundraising Heroes

FUNDRAISING HEROES

SHINING THE SPOTLIGHT ON SOME OF OUR FANTASTIC SUPPORTERS

Jonathan and Mical took to the skies in aid of SRUK, in memory of Jonathan’s mum (and Mical’s auntie), Almaz, who died in December 2019 after a battle with scleroderma. This amazing duo took on the challenge of a tandem skydive, and as if that wasn’t enough, they also added a 10K run to their list of fundraising events.

Rob has raised over £500, and Ian has raised £360! Great job guys! Alan set himself the challenge of running 20 half marathons in 2020 in memory of his sister, who died of scleroderma nearly 20 years ago. He has almost completed 20 races, with just a few left to go.

Together they have raised over £4,800! After doing Couch to 5K in January, Kristy decided that she needed an even bigger project, so she set herself the challenge of running at least one mile every day in September. Through her incredible running efforts, Kristy has raised £295. Paul will be running the Aintree 10k in December, in memory of his stepmother Maureen. Paul has been training hard for his run and has already raised an amazing £530. 26

Rob and Ian took part in My Prudential Ride London, the alternative to the physical event that was postponed due to COVID-19. The event offered the opportunity to take on their own 100-mile route near where they live.

Even better – Alan has raised over £1,000!

Catherine and her sister Karen, who lives with scleroderma, set off at 6am on a 10-mile hike along the River Thames, all to raise money for SRUK. Between them, they raised an amazing £330.

Bryony and Katherine took on the formidable Snowdon Triple Challenge in memory of Gilly, who died after a battle with scleroderma. The Triple Challenge involves a 10.5-mile cycle, a nine-mile trek (10,085m accent to the peak of Snowdon), and then a 2.5-mile kayak. They have raised over £1000 with their incredible efforts!

Join our Fundraising Heroes

Email: fundraising@suk.co.uk, Call: 020 3893 5993 or Visit: sruk.co.uk/get-involved 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 not achieve as much as we do without you and Donate to us through we are always striving to our website at sruk.co.uk achieve more. by clicking the donate If you have an idea as to button or by phoning our how SRUK can further friendly team on support the community 020 3893 5998 using then we would love to hear your debit/credit card. from you.

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.

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, then 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.

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

/WeAreSRUK