Doc Spot: your medical questions answered

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.

Q 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?

A 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.

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

Lisa, Heather, Cat and Vicky

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.

THE VIRGIN MONEY LONDON MARATHON

2021 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.

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 weekend, and it was lovely to meet you all. circumstances. I always think of my daughter, Lauren, who I lost a couple of years ago through 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

Special thanks to Tim Edwards

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.

Mark Macciochi running for SRUK Lee Coleman with Janet and David

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 involved, please get in touch. We will be there to support you, every step of the way.

For more information, please email fundraising@sruk.co.uk or call us on 020 3893 5998

FAST-FORWARD TO 2040:

WHAT DOES THE FUTURE HOLD FOR SCLERODERMA CARE?

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

Early warnings = better outcomes

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.

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

£ SRUK CHRISTMAS 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.

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

£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)

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

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