SRUK News - Autumn Edition 2021 by Scleroderma & Raynaud's UK

Issue 23 Autumn Edition 2021

SRUK NEWS They did it! Congratulations to the incredible Fundraising Heroes who took on the Virgin Money London Marathon for SRUK

Living with chronic fatigue: Good days, bad days, and everything in-between

What does the future hold? Our experts share their visions of care and treatment in 2040

Our Virtual Conference: Some key insights from a truly incredible day!

Christmas is coming! Can you help us make a difference this winter?

UPDATE UPDATE Fundraising update

Welcome

RA AII IIN NG DR G D U E DA UP TE PD AT 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. We are incredibly grateful to everyone that has supported us during these incredibly challenging times: each and every one of you really has made a difference, and we are thrilled that we can now connect in person once again!

Get ready for Raynaud’s Awareness Month – February 2022 Every February, we ask people to organise their own tea and coffee catch ups, to raise funds and to help increase awareness of Raynaud’s and its impact. We can help you to organise the perfect get-together, whether it’s tea, coffee and cake with close friends and family, or a staff fundraiser at work; we can help you plan for success. There are so many ways to get involved and fundraise for SRUK; whether you want to do it on your own, with friends, family or colleagues, at school or at work or even without leaving your home, we are here to support you every step of the way.

Events update The return of mass participation events is now in full-swing, and we are looking forward to an action-packed autumn. We have also recently released our 2022 events calendar. Registration for next year’s events is now open and we are ready and waiting to welcome you to #TeamSRUK. For more information on all the opportunities available and to secure your place, please visit sruk.co.uk/get-involved/events/

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

WELCOME TO THE LATEST EDITION OF SRUK NEWS

We have recently updated our fundraising pack, which is jammed full of fundraising tips and ideas. To get your pack, please email fundraising@sruk.co.uk or call us on 020 3893 5993.

From left: Gemma, Helena, Jonathan and Jess at The London Landmarks Half Marathon in August

Here are just some of the events that we are looking forward to in 2022: Events calendar 2022 Raynaud’s Awareness Month

February 2022

London Landmarks Half Marathon

Sunday 3 April 2022

Inflatable 5K Chester

Sunday 22 May 2022

Edinburgh Half Marathon

Sunday 29 May 2022

Scleroderma Awareness Month

June 2022

Nightrider London

Saturday 11 June/Sunday 12 June 2022

Hull Half Marathon

Sunday 12 June 2022

Goodwood Motor Circuit 10K

Sunday 3 July 2022 (TBC)

Barry Island 10K

Sunday 7 August 2022

London Marathon

Sunday 2 October 2022

Royal Parks Half Marathon

TBC

Dear Supporters I hope you’ve been able to enjoy the glorious autumn sunshine, albeit interspersed with some heavy downpours. As we head into the winter months, it’s really important to stay safe and we’ve been working hard with the Department of Heath & Care to try and improve the communication about the third dose. There has been a lot of confusion about the third COVID-19 vaccine dose and the booster programme. For anyone who is immunosuppressed and on particular medications then you are entitled to both a third dose of the vaccine and a booster dose in six months’ time. If you’re unsure, please visit the SRUK website: sruk.co.uk, call the Helpline or email us at info@sruk.co.uk for more information. We are delighted that the National Institute for Health and Care Excellence (NICE) approved the use of Nintedanib in treating progressive fibrosing interstitial lung disease (PF-ILD). Nintedanib has been shown to reduce the fibrosis which causes ILD, benefiting many people through slowing decline in their lung function. Your views on the realities of living with this condition helped SRUK to contribute to the success of the appraisal process. The SRUK Annual Virtual Conference in September was well attended with over 800 people viewing the

presentations, with people from as far afield as Myanmar, Japan, Singapore and Russia joining us. If you didn’t get a chance to attend, we will be making the content available on SRUK’s YouTube channel. Thank you to everyone who completed the patient survey we put out in July, which asked for your views and thoughts on what SRUK should do over the next five years, to help us shape SRUK’s strategy for 2022-27. Your feedback showed that raising awareness, providing information & support and continuing to fund research should remain the key cornerstones of the organisation.

Contents 4. Doc Spot: your medical questions answered 7. Our London Marathon Team 9. What does the future hold for scleroderma care? 11. SRUK Shop 14. Living with chronic fatigue 18. Patricia’s story 20. Finding Support 22. Highlights from our Virtual Conference 24. Our Christmas Appeal 26. Fundraising Heroes

Your support over the last year has been incredible and so a massive thank you from myself and the team for everything you do to increase awareness, help lobby for change and raise funds. Your contributions have never been more important, and I look forward to continuing to work with you all. Very best wishes

Sue

Your medical questions answered

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

Doc Spot

Is there a connection between morphoea and renal arteriovenous malformations (AVMs)?

Morphoea is the medical term for “localised scleroderma” which causes thickening or scarring of the skin, usually in patches at one or more sites of the body. It is the most common type of scleroderma in children but can occur at any age. Whilst not specifically associated with blood vessel malformations (AVM), sometimes when morphoea develops in childhood it can be associated with abnormal growth of underlying tissues that includes blood vessels. So, it is possible that AVM and morphoea could occur together, but this would be very rare.

Do you have any advice for dealing with worsening reflux symptoms? This tends to happen in the early hours of the morning, so it is interrupting my sleep as well. I am on the maximum dose of esomeprozole and I am also using Gaviscon regularly, but I am still being affected.

Systemic sclerosis almost always leads to abnormal function of the oesophagus (gullet) due to loss of contraction of the gut wall. This can lead to food sticking on swallowing, and to acid reflux and heartburn. Drugs such as esomeprazole that suppress stomach acid can be very helpful but sometimes are not sufficient. Adding antacids such as Gaviscon may be useful. Other drugs such as H2 blockers (e.g., famotidine) or sucralfate may be added, or drugs to stimulate contraction of the muscle such as metoclopramide. Measures such as elevating the head of the bed if there is reflux at night, eating small, frequent meals and avoiding eating within three hours of going to bed can also be useful. Unfortunately in systemic sclerosis, surgical approaches to tighten the lower oesophagus are not usually possible as this will worsen swallowing difficulty.

I have SSc and interstitial lung disease and I tend to have a rapid resting heart rate, around 90 BPM. Is this a normal part of my lung condition or could it be a sign that things are getting worse?

Interstitial lung disease is the process in systemic sclerosis that leads to scarring or fibrosis of the lungs. It occurs in around onethird of systemic sclerosis patients overall and can occur in both limited and diffuse subtypes. There are now more treatments for this complication. Sometimes, the lung involvement can make the heart work harder to circulate blood and this might cause the pulse rate to increase at rest, or on exercise. Checking heart and lung function with breathing tests, ECG and echocardiogram, as well as blood tests should be part of the regular review for systemic sclerosis, and in many centres will be performed annually.

intensive approaches, including surgery. Some patients have found that diverting the bowel through the abdominal skin, via an ileostomy or colostomy, is beneficial, but this is only appropriate for a small proportion of the most severe cases. More research into bowel involvement is a priority because it is such an important, unmet need for patients. Are there any Raynaud’s medications that do not reduce blood pressure? Should Raynaud’s medication be taken on a regular basis or is it ok to take these as and when you need them, nifedipine for example?

Raynaud’s can be helped by some drugs that open (dilate) blood vessels. Many of these are used to treat high blood pressure. Unfortunately, if you have a normal or low blood pressure then medications such as nifedipine can lower blood pressure too much, and cause side effects such as dizziness or headaches. Patients report that some vitamins or supplements can be helpful, and these are generally less likely to lower blood pressure. Doctors have also reported that patients with Raynaud’s can benefit from fluoxetine or related medications, and these do not usually affect blood pressure. However, any prescription treatments need to be discussed with your clinical team or family doctor.

My wife was diagnosed with systemic sclerosis 35 years ago and has suffered with gastrointestinal complications for about the past eight years. She is finding it increasingly difficult to manage her bowel function using prescribed medication. Is there any experience of whether performing an ileostomy on patients with scleroderma is a successful way of preventing them from becoming progressively Raynaud’s housebound?

How do people affected in this way manage living with bowel dysfunction? Many are women, who find the subject very embarrassing. Is there anything you can suggest?

I suffer from horrendous can Q ulcers in my mouth and be helped by some down my throat. I struggle drugs that open (dilate) to eat and even talk. What blood vessels. Many of these are the effective are used to treat high blood treatments? pressure. Unfortunately, if you Ulcers in the mouth A have a normal or low blood and throat in pressure then some medications systemic sclerosis can can lower this too much, and occur if there is severe dryness of the mouth or cause side effects such as overlap with other dizziness or headaches.

These questions really highlight some of the most difficult aspects of systemic sclerosis. Nearly all patients will develop gut symptoms such as heartburn or bloating after meals, but others will have more challenging problems including diarrhoea, severe constipation or difficulty controlling bowel activity and incontinence. Whilst some medical treatments can be helpful for the lower bowel problems, it is occasionally necessary to consider more

autoimmune diseases such as Sjogren’s syndrome. In addition, sometimes medications used in scleroderma or related diseases can lead to mouth ulcers. You should discuss that with your doctor, and you may require blood tests to check for other medical causes. Treatments for dryness of the mouth or ulcers are available, including mouthwashes and other approaches, but these should be discussed with your clinical team.

Your medical questions answered

Virgin Money London Marathon 2021

I have been diagnosed with diffuse systemic sclerosis and Raynaud’s. My hair is falling out quite drastically, is this due to the disease and the possible stress and what can I do to help please? Secondly, I keep seeing pictures of digital ulcers, and I wondered what I can do to prevent this from happening?

RESEARCH HAS SHOWN THAT ULCERATION, OR SKIN BREAKDOWN ON THE FINGERTIPS, CAN AFFECT UP TO HALF OF PATIENTS WITH SYSTEMIC SCLEROSIS AT SOME POINT IN THEIR DISEASE. IT CAN BE TREATED WITH DRUGS TO REDUCE ULCER FORMATION AND ENCOURAGE HEALING. THESE INCLUDE TABLET TREATMENTS AS WELL AS HOSPITAL-BASED INTRAVENOUS (“DRIP”) THERAPIES IN SOME CASES, SUCH AS ILOPROST. LOCAL MEASURES TO IMPROVE SKIN TEXTURE AND TREAT THE INFECTION OF ULCERS ARE ALSO IMPORTANT.

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

Systemic sclerosis has different forms and so it is important to understand your condition and I would really recommend all the great information available for patients from SRUK and through patient-centred activities and meetings. Hair loss can occur in many diseases or be related to medical conditions or to treatment with certain drugs, such as immune suppressants. It is therefore important to bring this to the attention of your clinical team in case there are specific tests or treatments to consider. Research has shown that ulceration, or skin breakdown on the fingertips, can affect up to half of patients with systemic sclerosis at some point in their disease. It can be treated with drugs to reduce ulcer formation and encourage the healing of ulcers. These include tablet treatments as well as hospitalbased intravenous (“drip”) therapies in some cases, such as iloprost. Local measures to improve skin texture and treat the infection of ulcers are also important.

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

Lisa, Heather, Cat and Vicky

THE VIRGIN MONEY LONDON MARATHON 2021 ON 3RD OCTOBER, THE 40TH VIRGIN MONEY LONDON MARATHON WAS FINALLY ABLE TO TAKE PLACE. We were thrilled that we could be there to support our incredible team of runners who took on this challenge to raise vital funds for SRUK. The atmosphere on the day was truly uplifting, with runners, families and supporters finally able to come together after having waited so long. But the marathon did not just take place in London, as many participants completed the event ‘virtually’ from all over the UK. As well as our team of seven SRUK runners who joined us in London, we also had three virtual runners who took on the same epic distance a little bit closer to home.

We set up our cheer station close to Mile 22 and stood at the barrier as the crowds grew around us, ready to greet and support our runners as they neared the finish line. The day started out a little chilly and grey, but the sun came out mid-morning and stayed with us for most of the day until a sudden, torrential downpour later in the afternoon. Luckily, the black clouds quickly parted, and once again we were standing in glorious sunshine as we greeted some of our runners as they passed us by.

SRUK even got on the radio! Our very own Gemma and Jess were delighted to have the opportunity to talk to a reporter from BBC Radio London, who approached us at the race-side as we stood cheering. They were able to give a detailed interview to raise awareness about Scleroderma and Raynaud’s, as well as the work of the charity and why we are so grateful to all of our runners for raising vital funds that will help us to continue our work.

Approaching Mile 22

Virgin Money London Marathon 2021

What does the future hold?

We were absolutely delighted to meet Lee Coleman, whose wife Heather took on this incredible challenge to fundraise for SRUK. Heather and Lee had come with their family, including their daughter Jodie as well as Lee’s mum Janet and her husband David. It was lovely to be able to chat to them at the race-side and to find out a little bit more about what “Thank you for your inspired Heather to take on fundraising for Scleroderma this challenge and what & Raynaud’s UK. If things become her fundraising means difficult when you’re doing your to them. We hope that fundraising, think of your own, personal you all had an amazing circumstances. I always think of my daughter, weekend, and it was Lauren, who I lost a couple of years ago through lovely to meet you all. scleroderma. Your work, and your money that you raise helps SRUK in their research. They’re helping people with the conditions and without this money they wouldn’t be able to do that, so every penny counts. Do the work, raise the money and everyone at SRUK, thank you all.”

Helena and Jess got caught in the rain!

Phillip Beckett, SRUK Fundraising Superhero. We are very grateful to Phillip for sharing his inspiring message of support to #TeamSRUK

WHAT DOES THE FUTURE HOLD FOR SCLERODERMA CARE? Lee Coleman with Janet and David

In September 2021, we held our first-ever Virtual Conference, featuring keynote speakers in the field of scleroderma care and research. At the final plenary session, we asked some of our experts: What will the future hold? What will care and treatment look like in 2040? Think of your own life for a moment ... a lot can happen in 20 years! The same rings true for medicine, where scientific research continues to drive improvements in diagnosis, treatment and care. Our everincreasing knowledge of the mechanisms that underpin conditions like scleroderma leads to the identification of new therapies, which can then undergo clinical development and trials before being approved for patients.

Professor Dame Carol Black acknowledged the importance of research during her welcome speech as she opened the Conference. Dame Carol spoke of how relatively little was known about scleroderma and how this contributed to a bleak outlook for patients in the 1970s, when as a ‘houseman’ she first encountered somebody with this condition who had developed kidney complications. She spoke of how it affected her when

sadly, this young woman died just three weeks later. Since then, we have come a long way in our understanding of how to treat scleroderma, with targeted therapies that would not have been dreamed of in the 1970s! So, what advances might we expect to see over the next 20 years? SRUK invited Dr Elizabeth Volkmann, Professor Francesco Del Galdo and Professor Chris Denton to fast-forward to 2040, and share their vision of what the future could hold.

In 2040: diagnosis patterns will have shifted, with people being diagnosed earlier

Special thanks to Tim Edwards

Early warnings = better outcomes

We would like to thank Tim Edwards, our amazing volunteer photographer, who gave up his time to be with us on the day and who captured these amazing images for us. So, thank you Tim, we are incredibly grateful for your support.

Next year, we will do it all over again! The TCS London Marathon 2022 will take place on 2 October. If you would like some more information about how to get For more information, involved, please please email get in touch. We will be there to fundraising@sruk.co.uk support you, every or call us on step of the way.

020 3893 5998

FAST-FORWARD TO 2040:

Mark Macciochi running for SRUK

Professor Francesco Del Galdo from The University of Leeds, envisages a future where people with scleroderma will be diagnosed earlier. This is a challenging and progressive condition, where overactive inflammatory responses cause scarring that eventually leads to irreversible damage. Early diagnosis could enable doctors to prevent these irreparable changes from occurring. Today, people report waiting three-to-five years for a diagnosis, with many experiencing Raynaud’s long before they approach a GP.

In fact, around 97% of people with scleroderma report Raynaud’s attacks as their first symptom. Knowing this, it is possible that in 20 years’ time, people with Raynaud’s could be screened for a high, medium, or low risk of developing scleroderma. Professor Del Galdo is leading research that could make this aspiration possible. Through studying a group of patients with Raynaud’s who have a higherthan-usual risk of progressing to scleroderma, he hopes to identify biomarkers that could serve as early warning indicators. Professor Del Galdo believes that this work will contribute to

a future paradigm shift: patients with Raynaud’s will be tested for their ‘risk of autoimmunity’; and those in higher and medium risk categories will be monitored for signs of biological activity (the early symptoms of scleroderma) and may be offered treatments at that stage. It is hoped that in the future, patients will only be diagnosed with scleroderma if all attempts to prevent the condition have been unsuccessful. This prevention work could be initiated before someone has even been diagnosed, through monitoring their ‘biological activity,’ meaning the processes that underly autoimmunity. 9

What does the future hold?

Shop

Christmas is just around the corner, so this is the perfect time to start shopping and to treat yourself as well! You’ll find some new products in the SRUK Christmas Shop this year, and of course some old favourites as well. As the nights draw in, we have everything you need to stay warm and cosy, whatever the weather.

In 2040: We will be able to predict early on if a patient will develop organ involvement Could prediction = prevention? Scleroderma is a varied and complex condition. Some people start off with incredibly severe symptoms yet remain stable for a lifetime; others may have mild symptoms at first and then deteriorate suddenly. Some patients may have severe gastro-intestinal involvement whereas others develop lung, heart, or kidney issues. When we endeavour to improve patient outcomes, the more information we have on how someone is likely to progress, the sooner treatment can begin.

Dr Elizabeth Volkmann, of The University of California, Los Angeles, is interested in developing individual treatment approaches that will aim to treat or even prevent organ involvement before it begins. Her work focuses on biomarker discovery and understanding how a person’s gut bacteria or microbiome may contribute to the inflammation seen in scleroderma. Dr Volkmann envisages a future where patients in the early stages will undergo prognostic tests of blood and stool samples. The results will inform about

a patient’s individual risk of developing organ-based complications like interstitial lung disease or pulmonary arterial hypertension. This knowledge would allow clinicians to ‘step in’ ahead of time with treatments or nutritional interventions to prevent these sometimesfatal complications from developing. This could also help to alleviate anxiety by providing reassurance to some people and giving others the best chance of a more positive outcome.

In 2040: Precision medicine will offer more effective treatment combinations and targeted monitoring Could technology become a doctor one day? Professor Chris Denton, from the Royal Free Hospital, London, shared Dr Volkmann’s view that the future will offer great opportunities for precision medicine, opening up more advanced drug combinations that could make today’s pioneering treatments like stem cell transplantation a thing of the past.

Professor Denton talked about his hopes for the continued evolution of the patient journey, noting that technological advances will allow more routine examinations and perhaps even heart and lung examinations to be carried out remotely. This is already becoming a reality due to research looking at

the possibility of remote skin monitoring triggered by the COVID-19 pandemic. Prof. Denton wonders whether wearable devices such as smart watches might even make routine checkups a thing of the past, with patients monitored on a continuous basis and alerted to contact the doctor if necessary.

How is SRUK making these visions a reality? As Dame Carol noted when she opened our Virtual Conference, research underpins all medical advances. As a crucial part of our research strategy, SRUK funds research which will advance the areas of early detection and diagnosis, precision medicine, quality of life and understanding the causes of scleroderma. These research themes were co-developed and prioritised in partnership with clinicians, researchers and those living with Scleroderma and Raynaud’s. SRUK already funds many exciting projects in the areas that were covered by Dr Volkmann and Professors Del Galdo and Denton. For more information and all the latest news, please visit sruk.co.uk/research 10

SRUK CHRISTMAS SHOP

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. XS, S/M, L/XL

12% = £23.50 Snuggle Up Blanket Relax with a Heat Holders premium fleece blanket - perfect 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. Dimensions: 180cm x 200cm. Comes in three different colours: Duck Egg Blue (pictured), Antique Silver and Cranberry

Stocking fillers: 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 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. One size

£5.50

£26.99 MyCoal Hand Warmers / MyCoal Foot Warmers Once opened, the disposable heat packs are activated by gently shaking or squeezing and can then be placed in your pocket, mitten, or glove/shoe. Stay comfortable with up to seven hours of warmth. These come in a pack of four pairs. Not re-usable.

Hand Warmers, £4.99 and Foot Warmers, £5.49 Box of hand warmers: £37.99 (40 pairs) Box of foot warmers: £43.99 (40 pairs)

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’s spending time outdoors or curled up inside, these socks offer additional comfort in all weather conditions. 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.

£7.00

Shop

CHRISTMAS CARDS

Christmas Cards (Pack of 10)

Cost

Blue Angel

£3.99

Partridge in a Pear Tree

£3.99

Buy any four packs of Christmas cards and get one free!

Robin on a Snowy Post

£3.99

Just return the form with the correct payment amount or call us on 020 3893 5998 for us to complete your order.

Snowman

£3.99

Tis the Season

£3.99

Winter in the Forest (Deer)

£3.99

Winter Scene

£3.99

Winter Woodland

£4.99

Silver Gloves

Cost

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

£23.50

Stocking Fillers and Other Products

Cost

SRUK Face Mask

£5.50

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

£7.00

Snuggle Up Blanket - Please specify the colour

£26.99

MyCoal Hand Warmers

£4.99

MyCoal Hand Warmers Box

£37.99

MyCoal Foot Warmers

£5.49

MyCoal Foot Warmers Box

£43.99

Jar Key

£7.00

Pack of 10: All £3.99 except Winter Woodland which is £4.99

Blue Angel

Robin on a Snowy Post

Partridge in a Pear Tree

Snowman

Qty

Size

Colour

Qty

Size

Colour Black

Qty

Size

Colour

Postage & Packing Costs

Tis the Season

Winter in the Forest

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 Postcode Telephone

Winter Scene

Winter Woodland

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

Living with chronic fatigue

IN-BETWEEN DAYS:

The cycle of Boom and Bust

LIVING WITH CHRONIC FATIGUE Lucy Reeve is a Clinical Specialist Occupational Therapist specialising in rheumatology. She has worked within the NHS for 26 years and is now part of the Pain Management Team at the Norfolk and Norwich University Hospital NHS Foundation Trust. Lucy herself was diagnosed with scleroderma in 2004; so she has a thorough understanding of this condition and its impact upon daily life. Here, Lucy looks at living with chronic fatigue from her professional perspective as an occupational therapist. Fatigue is often a common symptom for people living with long-term conditions. Of all the symptoms that we deal with when we have scleroderma, fatigue is often one of the most difficult aspects to live with. Chronic fatigue is very different to feeling tired. Some people describe it as an overwhelming physical and sometimes mental exhaustion, or that ‘the plug has been pulled.’ Any way you look at it, fatigue will often have a significant impact upon what we can do.

The cycle of fatigue Fatigue can stop us from doing many of the things that we want to, but the danger is that if we stop doing these things, it is very easy to fall into a negative cycle. When fatigue strikes, we may feel that we cannot do any more, so we need to slow down and stop. However, as we do less and less, the body can quickly become deconditioned which lowers our limitations even further, so that we can

The Cycle of Fatigue Fatigue

Low mood, low motivation

Many of us tend to behave in the same way as the hare from Aesop’s fable of The Tortoise and the Hare. We rush about with a long ‘to-do list’, and we hate to be limited in what we can do. We then fight against our fatigue and keep pushing ourselves to get things done.

The tortoise in the old fable was very different to the hare. He simply plodded along and did what he needed to do at a pace he could manage, and he ended up beating the hare because he did not need a long period of rest. The moral is about doing less, more often, and finding a consistent level of activity that you should be able to manage on most days. This is more commonly referred to as pacing ourselves.

Stop doing things, rest more

Because a ‘good day’ represents a kind of window of opportunity, it is normal to try and get as much done as possible. It feels perfectly natural to be guided by our energy levels in determining how much we are able or inclined to do. Put simply, when we have more energy, we try to achieve more. On the other hand, when our energy levels are lower we will feel able to do much less.

Learning the art of pacing On a normal (or in-between day), think about what you can do within your comfort level. This is the pace that works for you. Then, plan your day with the aim of achieving a more balanced pattern of activity, that includes a variety of different tasks with short breaks either side.

The Cycle of Boom and Bust Good day = More Energy

Good days, bad days and everything in-between

Body becomes deconditioned through inactivity 14

no longer do as much as we used to. Human beings like to keep busy and if we stop, this can lower our mood and our motivation. This is a vicious cycle, because we end up not wanting to do anything at all; and then face more pain and limitations in what we are able to achieve.

When we feel energised on a ‘good day’, we will often push ourselves harder (the boom), until we know that we have done too much. This then increases our level of fatigue (the bust), and we need more time to rest and recover. The danger is that if we repeat this cycle habitually over a long period of time, the amount that we are able to do is likely to reduce and it will gradually take longer and longer (the ‘bad days’), to recover when we have pushed ourselves too hard.

Pacing is about getting everything on the ‘to-do list’ done, but in a more achievable way. This means doing a consistent, manageable level of activity on most days when our energy levels are probably ‘average’ (or in-between). It also means resisting the natural temptation to push ourselves when we have a good day, thereby avoiding having to spend long periods trying to recover after doing too much. Ask yourself: how much can you do without being pushed to the limit?

Need to rest and recover

You can use an activity diary to plan a varied pattern throughout the day, working around your normal routine and the busiest times of day. Consider when you are normally at your best; and use these timeslots for the tasks that use the most energy. You can also include things that will help you, e.g., a relaxation technique or reading a book. If you have to do something more challenging, e.g., a hospital appointment, you can plan around this and include quieter times to recover.

Pacing yourself • K now your body. How much can you realistically do before you are pushed to your limits? • W hat can you do on a ‘bad day?’ This could be your starting point, because it should be easily achievable on a good day. • S top before you need to, without letting fatigue become the trigger that stops you. • S et an allotted time for an activity, e.g., by using the timer on your phone, and do not go over, even if you still feel ok. • S plit your activities into manageable segments. • D o a small amount of each activity. Vacuum one room at a time and then switch.

We do too much: The Boom

Increased fatigue: The Bust

• R otate activities regularly, including changing position from standing to sitting, and changing the nature of tasks from heavier to lighter. After the vacuuming, sit down to tackle the online grocery shop. • T ake frequent, short breaks in between tasks; although this does not necessarily mean you have to physically rest. 15

Living with chronic fatigue

Problem-solving

Prioritising

Our environment can make a big difference to what we are able to do comfortably. Ask yourself, is everything organised, and easy to clean? Are the things you need easily accessible, with cupboards at the right height? Does anything present a problem, and do you need anything to change?

No one can do everything, especially when you have limited energy. If you start to consider your energy level as your ‘budget,’ you can identify the best ways to spend it. It is easy to fall into a “Pacing is about pattern of using it all up on work, or on the getting everything on mundane. In fact, it is the ‘to-do list’ done, but the aspects that add in a more achievable way. fun and enjoyment This means doing a consistent, to our lives that manageable level of activity help to restore our on most days when energy, Next time you look at the our energy levels are tasks on your list, ask probably ‘average’ yourself: should I do it, (or in-between).” dump it, or delegate it? What could you leave out, and could anything be done by someone else? Remember to keep the aspects that you enjoy doing and that add value to your life.

Equipment is also important, because if certain tasks are more difficult, there might be a gadget that could help. For example, something as simple as a perching stool for the kitchen can make a big difference, especially if you are spending long periods in that space. Using equipment in the right way can save a lot of time and energy. Social services and community occupational therapists can sometimes provide essential items, such as raised toilet seats and bathing aids. Other equipment is usually available to purchase and may often be cheaper than you might expect. Do not forget to check the preloved and charity shop markets as these can be great for bargains. For more information, please visit livingmadeeasy.org.uk

Are you drained or sustained – what charges your battery? Fatigue may affect every area of life, but equally it is the different aspects of our lives that impact upon the level of fatigue that we experience.

Love yourself! Self-compassion is a big part of looking after ourselves. When we have health issues, we often need to allow ourselves to do things a bit differently. Remember that you do not need permission to seek help. We instinctively know what is helpful and what may cause us harm, so in looking at what you are doing on a typical day, think about what helps and what probably does not.

If we consider our energy levels as our ‘battery,’ it is important to understand that how we spend our time can help to either charge it or drain it. Some Often, when we It is aspects of life need to take care important to will help to of ourselves, it know yourself, and sustain our is easy to lack battery, what is normal for compassion, others you. By considering and self-criticise and simply identifying your drainers unwittingly turn drain it. and sustainers you into our own Eating well, worst enemy. can learn how to social activity After all, if we manage them. and getting would never insist a good night’s that our friends or sleep will all help to family keep pushing on if boost energy levels. On they were struggling, why should the other hand, emotional stress, we do it to ourselves? pushing ourselves too hard and the pressures of our working lives can all have the opposite effect. Stress and anxiety will drain our battery and lead to mental fatigue. Remember that you do not have to get physically worn out to become emotionally drained. It is important to know yourself, and what is normal for you. By considering and identifying your drainers and sustainers you can learn how to manage them. Think about what affects you and influences your energy levels, for better or worse. Consider also how you are spending your days, and any adjustments you could make. We all have an individual level of fatigue, so if you notice a sudden change for the worse, ask yourself if there could be a reason, and do not be afraid to go back to your doctor if necessary.

Your Stories

Patricia’s story

“You don’t see fatigue” Patricia George is 83 and lives in Norfolk. She has had a long career in nursing, and originally worked in theatres. She then moved to a neonatal unit and continued in her profession until the age of 70. Patricia officially retired at 65 and then stayed on the bank for a further five years. Patricia has Scleroderma and Raynaud’s, as well as Sjogren’s and emphysema. She was initially diagnosed with CREST at the age of 50 during the late 1980s, when she spontaneously called into the GP surgery on her way home from work to see if there was any chance that she could be seen. Fortunately, there was a locum available who immediately said: “it’s scleroderma.” This is Patricia’s story. My mother died when I was eight years old, she was a children’s nurse so maybe that is why I wanted to train as a nurse myself. I did a year at college after my O-Levels and then I started my training in 1956. I qualified as a State Registered Nurse in 1960 and I worked in the operating theatres. I was married in 1961 when I was 23. My daughter was born in 1964, followed by my son in 1967. Today, I have four grandchildren. It was after the birth of my son that I left theatre nursing and moved to the neonatal unit. 18

I don’t know if anything lucky that I was diagnosed triggered my condition. I was so quickly. I didn’t really need really fit in the past, we lived treatment for years. on a farm and I was doing a I was referred to Professor lot; I remember I used Scott in Norwich, and I to take loads of have attended clinics potatoes and ever since. Things “Before, I was eggs to work were not that with me. the Chairman of our bad at the local Women’s Institute, Then, I time, but they suddenly have got a lot and I was the leader of the had an worse since. Parish Council. I also used accident, My alimentary to be a church warden, when I tract was but I have had to stop, lost the affected and tip of my that was the all because of the ring finger first thing I was fatigue.” in a potato diagnosed with, harvester on and I have had this the farm. I always ever since. My stomach wondered if this was perhaps always feels full. a kind of trigger. I also had I do have fatigue which is to see a dermatologist many awful. I was not really aware of years ago, as I kept getting this during my working life on rashes on my skin: when we the wards, I would get tired as changed our theatre scrubs at normal when I was working but work something would trigger that was it. But the fatigue has an allergic reaction. So, I just gradually came on, more and don’t know. more over the years and it has I also saw another consultant got worse since I have given up and I was diagnosed with work, especially over the last Raynaud’s, which was the first two years. Before, I was the indication. At that time, the Chairman of our local Women’s doctor said it was something Institute, and I was the leader that people just live with. of the Parish Council. I also used to be a church warden, One day during the late 1980s but I have had to stop, all I had been to work, and on because of the fatigue. the way home I had a lot of discomfort. I went past the Now, I have to make myself village GP, and I stopped, get out of bed every morning even though I did not have an at 9am, otherwise I would just appointment. There was a lady lay there. Because the fatigue locum there and she told me is so bad, I get up and then sit at the time that she thought a while and then I have to start it was scleroderma. I was very applying my skin creams:-

the skin on my ankles is really tight now. I do have a massage regularly and this does help, so I treat myself every week-toten days. I also take vitamin D which I buy from the chemist. I have been well served by the occupational therapy team. I have tendonitis and they gave me a thumb brace; they have also made me two resting splints for both hands.

vascular surgeon was reluctant to remove it as she thought it would not heal, so I had a black toe until December of that year when it eventually had to be amputated. It took almost another year to heal with weekly dressings from the very good practice nurses at my surgery. The foot is still very painful as the other toes are now turning under.

Having this condition affects One of the worst things I have every part of me. I feel that I is the acid reflux. I also have have aged 10 years just in the a persistent fungal infection past year. If I hadn’t been about in my oesophagus. My reflux to retire when my symptoms seems to have altered started to get bad, I and now I get a would have had really awful taste. to give up my I wake up in job. This the early is mostly hours and “For me, Christmas has because of then I am had to change since my my hands. awake diagnosis. This year, I don’t I was more-ornursing want anything but to be able less until in the to cook a Christmas dinner it is time neonatal to get like I used to.” unit, and up. I have I wouldn’t had gastric have been able physiology to intubate a done and I am baby or take blood; supposed to eat even dressing a baby little-and-often, but my would have been very difficult. stomach always feels full. This is the worst thing for me. I can feel food going down and it feels like it’s sticking in my oesophagus. I had a very traumatic event in 2014, when I lost the big toe on my right foot to a blood clot. It happened in April and the

I have also had to give up my hobbies of calligraphy and metal-detecting. I met a lovely friend through metal-detecting and she still comes to see me. She metal-detects on our farm and then shows me what she has got. Someone from the

metal-detecting club still calls me regularly. I am lucky as I don’t have any commitments now, I don’t really have to do anything. Even though I don’t have to go for a walk, I still try to have one every day. I can’t stand for too long to do any cooking; I am not sure if this is because I am short of breath. My daughter does my shopping now and I do have ready-meals. I hardly eat any meat because I keep chewing but it won’t go down. My daughter and my daughter-in-law bring me roast dinners every week or so. It is difficult to know what to eat sometimes. But I live alone now so I don’t have to cook for anyone. I am lucky because I have cleaners and a window cleaner, but I can’t get a gardener at the moment. I do have someone to mow the lawn. For me, Christmas has had to change since my diagnosis. This year, I don’t want anything but to be able to cook a Christmas dinner like I used to. They love my Christmas dinners, but I can’t do it any more because of the fatigue. Now I like to be here on my own. When the grandkids were small I used to go and watch them open presents, but not anymore. I am always invited but I find I don’t like eating out anymore. These may be little things, but they mean a lot to me.

Finding Support

FINDING SUPPORT

Local Support Contacts Helpline:

As the only charity dedicated to improving the lives of people affected by Scleroderma and Raynaud’s, we are committed to providing a complete “Volunteering range of high-quality and reliable support on the Helpline services that are tailored to meeting was about giving the needs of our community. something back to the community that had been so supportive to me when I was first diagnosed with diffuse scleroderma.” Amelia

SRUK Helpline

Medical Enquiries

Our free Helpline enables anyone affected by Scleroderma and Raynaud’s to receive support whenever they need it. This service is available from 9am-7pm, 365 days a year and our amazing Helpline volunteers all have some personal experience of life with these conditions. The Helpline does get busy, so if the call goes to voicemail please leave a message and we will aim to call you back within 24 hours. As an accredited member of the Helplines Partnership, we always conform to their standards of excellence.

If you have a medical question, we can help you find the answer. Please email us at info@sruk.co.uk or call us on 020 3893 5998. We will forward your query on to a Scleroderma and Raynaud’s nurse specialist and get back to you as soon as we can.

“It was a difficult time to be diagnosed at the start of a pandemic, but thank goodness for charities like SRUK.” Sharon 20

Keep in Touch Support Service This is a telephone-based service designed to provide a little extra support during times like these. You can receive a regular phone call from one of our volunteers for a friendly chat about anything you like. Our volunteer will arrange to call you on a regular basis at a time that suits you. If you or someone you care for would like some more information, please contact us.

0800 311 2756

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

“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.” Celia

SRUK Support Group Midlands on Zoom

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.

Amersham

Marilyn York

Bedfordshire

Rita Boulton

Midlands

Avtar Gill

Lothian and Borders

Anne Hogan

Exeter

Mike Corbett

Yorkshire

Chris O’Hora

Merseyside

Pam Neagle

Norfolk

Lucy Reeve

Scottish Highlands

Lorraine Jack

South London

Celia Bhinda

South West Midlands and Cotswolds

Shirley Lynch

Northern Ireland

Una Gillespie

Wales

Enid Connick

“I felt there were a few people around my local area looking for some friendship, guidance and support so they don’t feel alone with the disease. It’s amazing when people realise there is somebody in their local area, or not too far away.” Lorraine

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.

For more information on any of our support services, please call 020 3893 5998 or email info@sruk.co.uk The SRUK Support Group in Scotland.

Virtual Conference

Just a few key messages from the day:

On skincare:

On prognosis:

On treating interstitial lung disease:

We have come a considerable way in the care and treatment of scleroderma in recent decades, but there is still a long way to go.

“THERE IS SO MUCH TO TALK ABOUT….” We would like to say a huge THANK YOU to everyone who supported our first-ever Virtual Conference. Your participation truly helped us to make this event a success, and we hope that you enjoyed it as much as we did. Over 700 people registered for the conference, with almost one-quarter from overseas and indeed from across the world; as we welcomed participants from the USA, Canada, Australia, New Zealand and Hong Kong, to name but a few. We would also like to say thank you once again to our incredible expert speakers, for giving up their time to be with us on the day. Although holding an online event did feel a bit different at first, a Virtual Conference provides a unique opportunity to come together, interact and share information in real-time. The experience was inclusive in a way that we have never seen before; with hundreds of people able to join us, all at the same time and from anywhere in the world. Our COVID-safe, online platform enabled us to meet in the virtual space and listen to expert speakers from all corners of the field of scleroderma care and research, as well as interact with our experts during the live Q&A sessions. Outside of the virtual auditorium, people could connect with one another via the live chat function, meet the exhibitors in the virtual lobby and even try out some practical sessions in our Health and Wellbeing Zone. 22

“There is so much to talk about. Compared to when I first got interested in this disease as a young doctor, when I cared for a young woman with scleroderma in the kidneys, she died under my care three weeks later. I was determined there should not be a disease that we knew virtually nothing about. I was determined I would do something in scleroderma and make a difference. I can see a flourishing of the dream with so many people making a difference, and SRUK playing a huge part in that.” Professor Dame Carol Black

Chris Denton

“It is fantastic that people are able to join from around the world. That is especially important for scleroderma as we are very much a global community.” Professor Chris Denton

“Maybe 30 years ago, we really had very little idea about how scleroderma develops, what caused it and what the fundamental mechanisms were ... we are in a better place now.” Professor Chris Denton

On causes: We still do not know what causes scleroderma. However, ongoing research suggests that genetic disposition along with various environmental factors may place certain people at a higher risk of developing the disease. “Whatever causes SSc, it occurs relatively infrequently. Patients may start off with a genetic susceptibility, and then a number of things may happen to them throughout their life at different stages, that may begin to trigger developing scleroderma. There may also be environmental triggers, but there are probably a series of triggers that may occur. Both the environment around you and the environment in your body can be relevant to whether you get the disease. We can’t really prevent the disease but if we can understand how it happens, we can perhaps advance therapy.” Professor Chris Denton

Moisturising is key! For very dry skin and for darker skin types, try a greasier lotion.

There are now several targeted therapies shown to be effective in treating ILD and slowing its progress for certain patient groups. Clinical trials are ongoing, and we need to improve our understanding of the potential benefits of using certain treatment combinations.

On paediatric scleroderma: Diagnosis rates remain low, currently estimated at 6080 children a year. Again, the definitive cause remains unknown, although genetic susceptibility may be a factor, coupled with other ‘triggers,’ such as an accident or another illness. Psychological support for affected children should be available as part of their ongoing care.

On managing GI tract involvement: Many people may find that symptoms can be controlled by making some dietary changes. This would involve looking at what we eat, as well as when and how we are eating it. However, there is no single, one-size-fits-all approach.

From our community… “Great talk with lots of good advice.” Roisin “How good was this talk? Wow. Clear and informative. Thanks.” Anne “This was a brilliant talk. Thanks.” Anne “Thank you for giving us more information.” Heather “Great conference, thank you.” Anona “I have found the information very helpful. The virtual format makes the conference very accessible to everyone. The range of information is extensive. Thank you.” Gill “I watched it all day. Really enjoyed it, very informative.” Zebbo

If you were not able to join us on the day, we do have all the video content and will endeavour to make this available once again over the coming weeks and months. As ever, if there are any areas that you would like us to cover in future events, please let us know. We can’t wait to do it all again next year. 23

SRUK Christmas Appeal

CHRISTMAS APPEAL

Please Donate!

SRUK CHRISTMAS APPEAL

Can you help us support our community this winter?

With the challenges of winter, Christmas can be especially hard for our community. This is why it’s so important that SRUK is here to help everyone affected by Scleroderma and Raynaud’s – at Christmas and throughout the year. We can achieve this together – your donations are vital to ensure we can continue our work. For many people, this is also the time of year to remember the people whom we miss the most. This Christmas, Jonathan and Mical Marcos will be remembering their mother Almaz, who passed away from scleroderma. “Christmas without our beloved mum isn’t the same as she was the heart and soul of our family. We miss her every day, but Christmas is especially hard, and this year will mark the second anniversary since losing her to an aggressive form of scleroderma.

Our mother was suddenly diagnosed without any warning or prior symptoms. She deteriorated fast, with every organ in her body affected and on 22 December 2019, she lost her battle aged 51 – only nine months after diagnosis. Our mum was the most loving and caring person with the biggest heart – she treated everyone like family. In her memory, we want to raise awareness and fund research into better treatments. Hopefully, with your help, one day there will be a cure and other families won’t experience the devastating loss of someone they love because of scleroderma.” Living with the impact of Scleroderma and Raynaud’s is tough, but with your support we can be here for our community – at Christmastime and beyond. Your donation means we can continue providing vital information and support and invest in cutting-edge research – funding better treatments and improved diagnosis with the aim of finding a cure.

Donation Form s co r a Almaz M

“In the future, I would like to see support for further research, more understanding and awareness and with hope in my heart, a pain free solution!” Sue

Title (Mr, Mrs, Miss, Ms, Other)

Home Address

___________________________________________________

Full Name (first and last name)

Town

___________________________________________________

Postcode

___________________________________________________

Tel/Mobile

Country

___________________________________________________

I enclose my donation of £____________ Please make cheques/vouchers payable to Scleroderma and Raynaud’s UK Card Number:

“It’s massively important in order to improve understanding and compassion towards those affected by scleroderma.” Georgina

Expiry Date:

Valid From:

Issue No:

Signature:

I want to Gift Aid my donation I confirm I would like all my donations, past, present, and future made to SRUK (registered charity number 1161828) to be treated as Gift Aid Donations. I am a UK taxpayer and I understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations to all charities in that tax year, it is my responsibility to pay any difference. I understand that SRUK will reclaim 25p of tax on every £1 that I have given. I will advise SRUK if my circumstances change.

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

Fundraising Heroes

FUNDRAISING HEROES

SHINING THE SPOTLIGHT ON SOME OF OUR FANTASTIC SUPPORTERS!

SRUK WALKERS Karen Henderson completed her 10km SRUK Walk with her son Dan. This is the second year Karen has walked for SRUK and was motivated to do it after the fantastic support she has received, particularly from her local Support Group. Karen has Scleroderma and Raynaud’s so this was a hard challenge but the nice weather, her love of walking and the picturesque surroundings helped her to achieve it; and so far she has raised over £215!

Caroline Styles achieved her SRUK Walk challenge of completing 19 walks during June and July – a minimum of 19,000 steps each (approximately 10 miles). Caroline, who has limited systemic sclerosis, CREST and Raynaud’s, said: “I have found your website a constant source of helpful information and support, never more so than during the current trying times for everyone. As a very keen walker, when I saw your “Walk to raise funds and awareness” on the website I set myself this challenge. My friends and family supported me by making donations and/or by joining me on some of my walks.”

TOMI’S ROARSUM SHOES! Tomi Platts designed a fabulous pair of Irregular Choice shoes, and the company donated 10% of the profits from their sales to SRUK. Tomi chose to support us in memory of her father-in-law who sadly died of scleroderma in 2004. We are pleased to say that we have received £2,502 – thank you so much to Tomi and to Design Asylum. Her mother-in-law Diana said that her husband “would have been even prouder of this special girl than he was. Life is full of surprises and it’s so good her fun will contribute towards your efforts to improve the lives of scleroderma sufferers in this way.” 26

Caroline has raised £375!

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 throughout 2022! For more information, please email fundraising@sruk.co.uk call 020 3893 5993 or visit sruk.co.uk/get-involved

SRUK RUNNERS We were thrilled to be able to meet David Hewitt when he ran The London Landmarks Half Marathon on behalf of SRUK in August. David managed to slow down and say hello to us as we cheered on #TeamSRUK. It was wonderful to be able support David and fellow runner Victoria in-person as they completed the course, and we are looking forward to meeting more of our runners over the coming months! 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 not achieve as much us through as we do without our website at you, and we are sruk.co.uk by clicking always striving to the donate button or by achieve more. If phoning our friendly team you have an idea as on 020 3893 5998 using to how SRUK can your debit/credit further support the 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. Pay your Membership by Direct Debit You are now able to pay your membership 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 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

SRUK News - Autumn Edition 2021

Articles inside

Doc Spot: your medical questions answered

What does the future hold for scleroderma care?

Living with chronic fatigue