SRUK NEWS Isolation Stories What have you been up to lately?
Into the Unknown Navigating the emotional journey towards a new ‘normal’
Exploring Acupuncture… ...does it actually help?
Meet some of our amazing fundraisers, including Emily and Zoe (pictured) who raised a staggering £2,738!
Issue 18 Summer Edition 2020
Events Update Due to the ongoing coronavirus pandemic, at the time of writing we are still unable to confirm whether any of our face-to-face events will go ahead this year. With this in mind, you have quickly helped us to get more creative and there are now many new ways to get involved and support us. From organising a virtual event or challenge to attending an online coffee morning or even a cocktail party, we have an idea for everyone. Please visit sruk.co.uk/get-involved/events/ for more information. We were also planning a full programme of conferences in 2020 prior to the lockdown, and we are currently looking at alternative ways to bring the content to you, using the wonder that is technology. Please check our website and news updates for the most up-to-date information. We would like to thank you all for your incredible, ongoing support throughout these times. We are all looking forward to the return of ‘normality’ and resuming our face-to-face events, however we have also learnt some new ways of doing things along the way. In the meantime, let’s all keep on doing what we still do best. 1
Dear Supporters I hope you are all keeping safe and well. As lockdown eases, I know that for many of you, particularly those who have been shielding, there is still a lot of uncertainty. Adjusting to the ‘new normal’ will take time, and no one can say for sure how long this will go on.
Sue Farrington
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Doc Spot
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SRUK Achieves PIF TICK Accreditation
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The Impact of COVID-19 on People With Rare Autoimmune Rheumatic Diseases
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Research – Improving Healthcare with Patient Registries
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SRUK Shop – Back in Business!
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Scleroderma Awareness Month 2020
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Isolation Stories: Living Life on the Inside
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Exploring Acupuncture
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Into the Unknown - Navigating the Emotional Journey Towards a ‘New Normal’
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Our Helpline and Support Services
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Our Support Groups in Scotland
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Fundraising Update
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Fundraising Thanks
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One thing I can say with certainty is that at SRUK, our main concern and priority is to make sure you have the right support and information. We will continue to monitor the COVID-19 situation closely and keep our website up to date. Providing accurate, evidence-based information is important at the best of times, but none more so than now. And so, I am particularly pleased to share with you that SRUK is one of the first charities to be awarded the PIF TICK, the new information standard. Please see page five for more information. During the past few months, we have run several Q+A’s on our Facebook pages, covering topics from dealing with your mental health and wellbeing to expert advice on employment rights, and all of these can be viewed via our YouTube channel. We’ve been working with our Support Group Leaders to make sure that support continues to be available by moving meetings online. We have been able to re-introduce a support group for Northern Ireland thanks to Una Gillespie and we have two new groups in the pipeline for Central and South Wales. For more information on support groups please see page 22. In June we published a report ‘Chronic Crisis’, (see page six), which highlights the severe disruption caused by the pandemic for people in our community. But the crisis is also “chronic” because many of these issues with care and support have their roots in problems which were present long before this pandemic. The timing of the report led to an article in The Guardian, and I was also interviewed on BBC News 24 with Sara McAreavey, recently diagnosed with Scleroderma, discussing the impact of the updated guidance for people shielding in England. Over the coming months we will continue to work with our colleagues at RAIRDA to raise your concerns about your care and treatment with the Government and the NHS.
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My thanks to every one of you for showing such amazing community spirit in supporting us and one another. These remain anxious times, so please do continue to call or email us if you have any questions or concerns. Very best wishes Sue
Lockdown Stories
Into the Unknown
sue.farrington@sruk.co.uk @farrsue01
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Doc Spot Your questions answered by our medical professional, Prof. Denton
I am still concerned about COVID-19. I am on methotrexate and prednisolone, would I still run a genuine temperature? I have also read articles recommending a home oximeter in the event of catching the virus, however since I have Raynaud’s will the readings be distorted? It is very understandable that you are fearful of COVID-19. This has been a devastating illness and patients with systemic sclerosis receiving immunosuppression such as methotrexate together with steroid treatment (prednisolone) are included in the group of individuals who were advised by the UK Government to “shield”. This is sensible because any infection may be more serious if you have a weakened immune system. Despite shielding, the nature of the pandemic has resulted in a significant number of cases occurring in patients with systemic sclerosis as well as other autoimmune rheumatic diseases. However, new expert recommendations now suggest that people who are living with such conditions may not be more likely to either contract or become severely affected by COVID-19. Therefore, whilst it is important to follow Government advice, it may be that the risk to people with Scleroderma is lower than was feared. With regard to the oximeter, it is possible for results to be lower than expected in patients with Raynaud’s but not necessarily, and so it is important to take some control readings when you feel well, so that you know what the baseline level is. Treatments are not likely to affect temperature measurements, however it is clear that fever is not always a feature of COVID-19. In general, if you are concerned that you are showing symptoms you should seek and follow the general advice and make sure that your diagnosis and treatment are fully explained.
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Regarding the risk factors for COVID-19, am I correct in thinking that there is only an increased risk to patients on particular medications? I only take Nifedipine when my Raynaud’s is especially bad. I intend to return to work and normal activities as far as the restrictions allow. There is no reliable evidence that treatments for Raynaud’s will have any adverse effects should you contract COVID-19 in terms of increased risk or severity, and so my advice is to continue with your medication as usual; however if you are concerned then you should discuss this with your clinical team. They may suggest that certain symptomatic treatments could be discontinued, however please check first.
I have Scleroderma with lung and gut involvement but no immunosuppressants. I want to keep working from home as I feel I am at risk until a vaccine is available, but my employers require a medical note. What should I do? This is something that you should discuss with your employer and will be influenced by Government advice, since as long as this continues to state that you should work from home wherever possible then what you are asking would seem reasonable. Once the risk is classed as low and the advice changes, you may well be advised to return to work. The development of a vaccine may take a long time and so at present other measures to reduce the risk such as social distancing and other protective steps are probably more important. Whilst COVID-19 can be very serious in a minority of patients, experts have recently agreed that autoimmune rheumatic diseases such as Scleroderma are not generally associated with increased risk or severity, which is reassuring for our community.
Do you know of any specific dietary interventions that may help people with Scleroderma to boost their immunity or lower inflammation levels? I would emphasise the importance of a good general diet and maintaining adequate nutrition, as well as taking all reasonable steps to maintain wellbeing. However, some nutrients and vitamins may be beneficial to the immune system and many patients choose to take supplements of vitamin C and vitamin D, amongst others. Whilst not proven to be helpful they are unlikely to cause any adverse effects as long as you do not exceed the recommended maximum dosage.
Can Scleroderma affect my sense of touch? I have noticed a few changes lately, and whenever I have a shower the water always feels extremely hot on my skin, despite feeling ok to the rest of my family. Systemic sclerosis can affect sensation in the skin due to the effect on the nerves and blood vessels and because the thickened skin may have altered sensitivity due to inflammation. This could explain the symptoms that you describe. Conversely, some patients actually have reduced sensitivity to heat, so it is important in such cases to carefully check the temperatures of fluids and of objects to avoid any unintentional burns.
I have systemic sclerosis and I feel that my condition is getting worse, however my follow-up appointment is ‘on-hold’ due to the pandemic. I have read your information on annual tests and am concerned that I am not being offered these. Please can you advise what I should do?
This is an important point. Many routine clinic visits and tests have been postponed due to the COVID-19 pandemic, although these will be reorganised as the situation improves. However, the number of test slots available is likely to be reduced and there are particular potential problems for lung function testing, because extra care may be needed to reduce the risk of cross-infection. It is important to keep in contact with your specialist centre and to alert the clinical team to any changes that might suggest that your condition could be worsening, such as an increase in breathlessness. Since attendance at the hospital may be difficult, some clinics are now taking place via telemedicine. This allows urgent cases to be seen virtually and for certain tests to be given clinical priority.
You can connect with us on Twitter, Instagram and Facebook. /WeAreSRUK
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 4
SRUK Achieves PIF TICK Accreditation “Achieving the PIF TICK gives credibility to our information materials. We pride ourselves on having high-quality information standards. “Our community, including the healthcare professionals who distribute our information, have the reassurance that this information is reliable, trustworthy and will enable people to make informed decisions about their healthcare.” Ollie Scott, Information and Support Services Manager, SRUK We are delighted to announce that Scleroderma & Raynaud’s UK is now PIF TICK accredited. This demonstrates that the information we provide to our community and beyond has been certified for accuracy and relevance. PIF stands for Patient Information Forum, the independent UK membership body for organisations involved in health information and support. Our certification under this scheme reflects our commitment to the provision of high-quality health information. The PIF quality mark or ‘PIF TICK’ is the new standard that was launched to replace the former Information Standard. To qualify, health information organisations must meet the ten key criteria developed by PIF’s 1000-strong membership that represents over 300 health organisations. There was an initial pilot involving a small group of major health brands and charities to test this criteria, alongside other organisations including Bupa, Cancer Research UK and The Royal College of Anaesthetists. The PIF TICK logo can now be applied to leaflets and websites, or to any health information source that has undergone the certified production process. SRUK as one of the early members of the scheme underwent an assessment to show that our production process meets all of the following: 1. Information is created using a consistent and documented process 2. Staff are trained and supported to produce high-quality information 3. Information meets an identified consumer need 4. Information is based on reliable, up-to-date evidence
6. Information is written in plain English 7. Print and digital information is easy to use and navigate 8. Users can give feedback on information 9. Information is promoted to ensure it reaches those who need it 10. The impact of information is measured
5. Patients are involved in the development of health information All of this is important to us because we pride ourselves on being a reliable source of health information for the public. Everything that we do goes through a rigorous reviewing process. After something has been written, it is then peer reviewed. After that, we send it out to one of our members to read and then it is submitted for final approval. This process ensures that by the time you receive a support programme PDF or patient story, it is of the highest calibre. Research by PIF found that over 80% of the public would look for a quality mark on health information. Much of our content already has the Information Standard NHS England quality mark, which again means that all the information produced has been certified as being clear, accurate, impartial, evidence-based, and current. Sue Farrington, Chair of PIF and Chief Executive of Scleroderma & Raynaud’s UK said: “Supporting and driving up quality and trust in health information has always been at the heart of PIF. “It has never been more important to signpost the public to trustworthy health information than in the current crisis. Following the success of the pilot, I am proud that SRUK is one of the first organisations to be awarded the PIF TICK. I would like to thank the 12 organisations who worked with us to develop and pilot the PIF TICK, which has been well-received across all sectors.” At SRUK we are constantly working to bring you the latest, clearest and most useful health advice and we are over the moon that our efforts have once again been recognised.
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The Impact of COVID-19 on People With Rare Autoimmune Rheumatic Diseases As part of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), SRUK works with Lupus UK, Vasculitis UK and The British Sjogren’s Syndrome Association, to campaign for improved care for people living with rare autoimmune rheumatic diseases (RAIRDs); as well as to raise the profile of these conditions, influence policy and guide future research. The COVID-19 pandemic has caused severe disruption for people living with RAIRDs. Findings from RAIRDA’s 2018 report, Reduce, Improve, Empower demonstrated that even before this public health crisis, a large proportion of affected people felt that the existing healthcare system did not always provide them with sufficient support, and that there was often a lack of knowledge at primary care level. Based on this awareness, and to better understand the impact of shielding, the disruption to care provision and the potential effect on our community’s employment and income, we conducted an online survey of people with RAIRDs in the spring of 2020. We received over 1,300 responses, including 325 from people living with Scleroderma. Alongside multiple-choice answers, there were a multitude of comments on the issues that people felt were especially important to them, that articulated their experiences over the last few months. The report, entitled Chronic Crisis - The impact of COVID-19 on people with rare autoimmune rheumatic diseases, was published in June, and the key findings included: • 54% of respondents were shielding at the time • 80% had experienced a change in their care and treatment • 37% said that their ability to manage their condition had been affected • 33% of people with RAIRDs said that the pandemic had adversely impacted upon their household finances, compared to 23% of the general public • 34% said that advice from the health service or the Government was ‘unclear and contradictory’ The data and comments from the respondents illustrate that for some people living with RAIRDs, medical care already felt disjointed and uncoordinated, and that this has been further exacerbated by the effects of the pandemic. This is particularly evidenced by the number of individuals who feel that there has been a lack of clarity in the communication of health protection advice.
Shielding letters did not arrive until May for some people, having a knock-on effect on working arrangements. Many respondents also expressed their concerns around the psychological impact of shielding and the potential harm to mental health. What is perhaps most concerning is the number of people who feel ‘abandoned’ by the health service, as a result of the lack of accessible information about how vulnerable they are, and of any changes to their treatment plans. The latter is critical, since although certain changes to the provision of healthcare for people with RAIRDs were necessary to minimise potential exposure to COVID-19, extended delays in treatment pathways can lead to additional complications. Routine monitoring is needed to assess disease activity, which may go undetected and rapidly worsen if not treated in a timely manner. 80% of respondents experienced a change in their care, with over one-third reporting that this impacted upon their ability to manage their condition. This shows a very different picture to the Office for National Statistics report on all shielding patients collected during late May, which states that fewer than one-third have experienced changes to their care. Based on the findings of this survey, we have made a number of recommendations in the final report. These include utilising the same public health messages across the NHS and within all healthcare settings to avoid confusion, as well as providing consistent support for shielding groups as lockdown eases, especially with regard to mental health, since many people still have concerns and may be feeling the effects of prolonged isolation. To read the full report, please visit: rairdaorg.files.wordpress. com/2020/06/rairda-survey-report-22.06.2020updated.pdf. The timing of the report led to Sue Farrington, CEO of SRUK and Co-Chair of RAIRDA, being quoted in The Guardian about changes in shielding guidance. Sue was also interviewed on BBC News 24 with Sara McAreavey, who was recently diagnosed with Scleroderma – discussing the impact of the updated guidance for people shielding in England. The data from the survey has been included in submissions to the following committees: UK Parliament Health and Social Care Committee; UK Parliament Business Energy and Industrial Strategy Committee and the Welsh Parliament Health, Social Care and Sport Committee. SRUK will continue to work with RAIRDA to champion Scleroderma and the needs of the RAIRDs community, throughout the COVID-19 crisis and beyond.
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Improving Healthcare with Patient Registries SRUK held a Thought Leaders Roundtable with patients, clinicians and researchers, to help us identify the barriers to accelerating progress in delivering new treatments. A key challenge has been the current lack of a consistent, coherent dataset about Scleroderma and Raynaud’s. This has led to a discussion about SRUK establishing a Patient Registry. A Patient Registry allows for key data to be collected in a standard way, which then enables a more coherent picture of the condition to be gathered and assessed. Typically, the data collected includes areas such as medical history, time taken to reach a diagnosis, treatments received and PROMS (patient reported outcomes). According to the report ‘Saving Lives with Patient Data Registries’ published in 2018 by the Association of Medical Research Charities, disease specific Patient Registries which collect data from across the UK have demonstrated considerable value to healthcare, and have been credited with significantly accelerating the rate of research, improving access to new treatments and providing the evidence base needed for policy decisionmaking.
We also wanted to understand from our clinical and patient community whether there was the appetite and support for such an initiative. There was general consensus amongst all the delegates that the creation of a single national Patient Registry would create significant opportunities.
The advantages of having such a platform include: •
Improved access to treatment and care: a registry will enable us to better monitor the efficacy of new and prescribed treatments across all locations, which could lead to improved access to treatments. The data could be used to provide evidence about best practice and improve the levels of standardised care across the centres. This has a huge advantage in removing large variations in clinical care for patients across the UK, so that each Scleroderma patient is receiving the best possible level of care available.
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Clinical trials: because Scleroderma is heterogenous in nature, identifying patients to participate in clinical trials has proved challenging. A national registry will make it easier to identify potential recruits for clinical trials just based on their symptoms. This could have a significant impact on the development of potential therapies.
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Research: advances in health data research tools mean that large and complex data sets can be more easily analysed, providing the insight needed to help further our understanding of Scleroderma.
For rare diseases such as Scleroderma, the implementation of a unified Patient Registry across the UK that can collect data from patients at various stages is advantageous in clinical trials and would also be highly useful for earlier detection. Early detection falls under one of the four key areas of the five-year Research Strategy developed by SRUK, and so we decided to explore the options to develop and run a nationally-unified Patient Registry, which could collate data from across the UK to create a single central database, beginning initially with the six specialist Scleroderma centres. To better understand how this might work, SRUK held a one-day Patient Registry Workshop in December 2019 at the King’s Fund, London. The workshop was attended by senior clinicians and patients from our community. It was an opportunity to hear from other charities and organisations involved in developing and running Patient Registries. Invited speakers included representatives from the Cystic Fibrosis Trust, Health Data Research UK and the University of Manchester.
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Given the clear advantages that could be gained from having a single, national Patient Registry, SRUK have formed a steering group committee, which will consider issues such as consent measures, adherence to ethical frameworks and what appropriate governance needs to be in place, as well as the resources and budget that would be required.
SRUK 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. Available in 8% or 12%. (NB 8% = silver, 12% = black). xs, s/m, l/xl 12% = £20.99, 8% = £10.99
Hand warmers – individual pack/box
Foot 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 reused once opened.
Warm up your toes and feet with these warmers designed especially for those cold nights. These foot warmers can be placed at the toe end of your shoe. The heat pads remain warm for up to seven hours.
1 box (includes 40 warmers) = £37.99 1 pack (includes 4 warmers) = £4.99
1 box (includes 40 warmers) = £43.99 1 pack (includes 4 warmers) = £5.49
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. 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 £14.99
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SRUK Shop Intelex pillow boots Treat your hard working feet to these luxurious pillow boots. Super soft materials for the ultimate in comfort, they’re perfect for cosy nights in and keeping your feet warm in winter
One size £14.95
Ladies’ slippers for cold feet
Kids’ slipper socks frozen/star wars
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.
These super snuggly character socks are perfect for little ones! Heat Holders incredible warmth together with their slip resistant grip makes them perfect for wearing around the home.
Relax with a Heat Holders premium fleece blanket- perfect for wrapping up warmly on those chilly nights. With a 1.4 tog rating, its generous size and incredible softness make it a must-have item for peaceful days at home.
£10.99
£24.99
£27.00
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Snuggle up blanket
SRUK shop Product Details Shop Products
Cost
Qty
Size
Colour
Intelex Pillow Boots
£14.95
One Size
Ladies’ Slippers for Cold Feet (S or M or L)
£27.00
UK 5, 6, 7
Snuggle Up Blanket
£24.99
Cranberry
12% Silver Gloves (S/M or L/XL)
£20.99
Black
12% Silver Gloves - 2 pack (S or S/M or L/XL)
£38.99
Black
Mycoal Hand Warmers (4 packs)
£4.99
Mycoal Foot Warmers (4 packs)
£5.49
8% Gloves Per Pair (XS or S-M or L/XL)
£10.99
Grey
8% Gloves - Twin Pack (XS or S-M or L/XL)
£19.99
Grey
12% Short Socks Pair (S or M or L or XL)
£12.99
Black
12% Short Socks 3 pack (S or M or L or XL
£32.99
Black
12% Long Socks Pair (S or M or L or XL)
£14.99
Black
12% Long Socks 3 pack (S or M or L or XL)
£38.99
Black
Postage & Packing Costs Postage and packing for single items Postage and packaging for multiple items
£2.99 £1.00 extra per item
Total Order Total cost of goods Postage & Packaging To include a donation please add here Total enclosed
Name Address Postcode Telephone Email
Please return to: Bride House, 18 – 20 Bride Lane, London EC4Y 8EE
For more products and information go to www.srukshop.co.uk or call 020 3893 5998 10
Scleroderma Awareness Month June 2020 Our aim for the month - #Knowscleroderma As with previous years, we continued our key messages and objectives: to make more people aware of the signs and symptoms of Scleroderma, and to promote better knowledge and understanding of how it impacts your lives. However, this year we also had the message of “Scleroderma in the time of Coronavirus” to highlight the additional impact of COVID-19 on our community. World Scleroderma Day – 29 June 2020 This is not just here in the UK; Scleroderma associations and charities all over the world have been working to promote awareness to mark World Scleroderma Day on 29 June. Each organisation has their own campaigns and stories, however the overarching message is that “our smile is vulnerable.” This year also saw a new message relating to coronavirus: “protect yourselves to protect us”. In partnership with FESCA (Federation of European Scleroderma Associations), we produced an animation highlighting how the Scleroderma community is more vulnerable and urging people to “protect yourselves to protect us”. Our social media adverts proved popular and the video was viewed more than 14,000 times in one week. You can watch this animation and FESCA’s video on our YouTube channel: WeAreSRUK, or on our website:
sruk.co.uk
Thank you to everyone that was willing to share their stories about the impact of COVID-19: from how hand sanitiser and frequent handwashing affect your skin to the effects of shielding on your lives, your mental health and your families; and how cancelled treatments and appointments have affected your symptoms. Coverage We secured National TV coverage of our campaign! Our CEO, Sue Farrington, was featured on BBC News24 along with Sara McAreavey, to discuss the impact of the changes in the shielding guidance for people with Scleroderma. Sara also appeared later that day on BBC Radio Four – The World Tonight show. The Sunday Post in Scotland published a full feature on Cara and Karen Hockley’s story. We also had several medical-related online features and mentions, including the British Association of Dermatologists and Bupa Online who featured our blog authored by Professor Chris Denton. On social media we engaged with a wide variety of people across all age groups, with so many sharing their stories alongside ours.
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Isolation stories Since we first heard that strange new word ‘coronavirus’ all those months ago, many of us have seen our lives changed unimaginably, all within such a short space of time. Although we have all had to come to terms with our daily routines being turned upside down, shielding or self-isolating have undoubtedly been the most difficult aspects of these changes, across our community and beyond.
The Highlands Support Group on a Zoom call
For many people, shielding meant having to live without the people who matter most. It has often caused practical difficulties as well, especially around the simple things we have come to rely on, such as shopping and picking up prescriptions. Many people have had crucial appointments put on hold. Then there are all the little things that we seemed to take for granted in our normal lives, including the freedom of just getting out and about. Amazingly, we have found new ways to adapt, to keep busy and to stay in touch during these unprecedented times. We reached out to our community to find out what everyone has been getting up to over the past few months, and we are incredibly grateful to everyone who shared their stories of getting through this truly unbelievable experience.
Sara’s story “During lockdown, and especially whilst shielding, I’ve been feeling very isolated and missing my trips out for walks in the countryside. So as I couldn’t go to nature, I tried to bring nature to me! I’ve invested in a number of house plants (all with names of course!), which I’m using my time at home to care for. I usually end up killing plants as I’m not particularly green-fingered, but I’ve had a lot more time on my hands recently to research how best to care for them, as well as time just tending to them! I’ve also been out planting as many flowers and shrubs as I can in the garden, as well as tending to the ones already there. This has not only been great for my anxiety; but has also given me a different way to exercise, since I couldn’t leave the house. All in all, it’s been a thoroughly enjoyable way to spend my time in lockdown :)” Sara McAreavey
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Georgina’s story “The thing I love doing most in life is spending time with my family and friends. Any opportunity I get to meet up I’ll be there if I can. So, as lockdown started, I felt really sad at the thought of not being able to see people for a long time. I feel extremely grateful to be isolating with my parents and my brother; but not being able to see my sister who I’m incredibly close to has been hard. Not seeing friends, those who have given birth recently and the little ones I miss so much. Babies and children grow up so fast I feel really gutted to be missing these special times. One thing that has helped this situation a lot has been video calling! Thank you, technology! It has made isolating a lot easier being able to see people on screen at least. My sister and some close friends hold video quiz nights every Friday. I’ve taken this as an opportunity to get dressed up as I would if I was ‘actually going out’ and I find it all helps to keep our spirits up, keeping us in touch and able to check up on each other. It has also been really nice to catch up with friends that are dotted around the country and those who are not in the UK. This is definitely something that I’d love to keep up when isolation is over.” Georgina Pantano
Cara’s story “I love doing crafts and have taught myself a few new skills while I have been shielding. My systemic sclerosis affects my hands and so these crafts have been really great for helping my hand mobility.” Cara, 17, has systemic sclerosis. For Cara, the coronavirus pandemic has led to cancelled appointments, dried out and very painful hands exacerbated by the extra handwashing and sanitising; and also to shielding which has impacted on her whole family. The biggest disappointment however has been the delay of a possible stem cell transplant which could transform her life. “I understand why but it’s disheartening. Scleroderma has taken away all my prime teen years and it’s hard to find others my age going through it too.” Cara is also the youngest member of our wonderfully active Scleroderma and Raynaud’s support group in the Scottish Highlands. When the country first went into lockdown the group could no longer meet in person and many familiar faces have had to shield, which has been incredibly difficult for everyone. With this in mind, Cara suggested setting up a Zoom call every week, so that the group would not lose touch. This has been a great success; so much so that several new members have even joined the group during lockdown.
Shirley’s story We are extremely grateful to Shirley Gunning for all of her generous support throughout this summer. Shirley has recently been diagnosed with Scleroderma. She is a qualified beautician but has now had to stop working as the condition has affected her hands to such an extent that she is no longer able to carry out treatments. During May this year, Shirley partnered with Neal’s Yard Remedies, a company offering a wide range of ethically-sourced health and beauty products that use natural ingredients. She kindly donated all of her profits from website sales to SRUK during Scleroderma Awareness Month in June; and has even decided to continue for the rest of the summer! For more information on the range available from Neal’s Yard Remedies, please visit Shirley’s page at https://uk.nyrorganic.com/shop/shirleygunning/. As ever, always talk to your doctor or dermatologist before making any changes to your skincare routine.
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Eva Grealish Eva Grealish has Scleroderma, Raynaud’s and Sjogren’s. She works as a children’s mental health nurse and is currently working from home which can be really challenging in her line of work. In her story, Eva tells us about how COVID-19 has impacted upon all aspects of her life: “Handwashing and santiser have wrecked my hands completely. I really struggle at this time of year – my regular infusion has been postponed and that’s had a big impact. My hands were blue yesterday in spite of it being the hottest day of the year. And it’s been hard to get hold of my hydroxychloroquine so I’ve had to reduce my dosage so I don’t run out.” Eva Grealish
Lauren’s story “Absolutely in love with my website! I hope you guys love it just as much as me” Lauren Harvey Lauren Harvey, who has systemic sclerosis, launched her new website, www. butterflyblue.uk whilst shielding during the COVID-19 crisis. This is a new blog that is designed to inspire people to raise awareness of Scleroderma, by helping them to understand the different elements of this often-complex condition. Lauren uses her platform to look at the various aspects of living with Scleroderma with honesty, empathy and humour. The site is very welcoming and user-friendly, and you can even become a member! For more information or to join the discussion, please visit www.butterflyblue.uk
And finally . . . At Scleroderma & Raynaud’s UK our team is still here, even though we have had to find new ways in which to operate, at least for the time being. We are all still working remotely, however our roles have not changed, and neither have our services. The Helpline also remains open every day. Our staff team is still as strong as ever, and we can successfully coordinate with each other by holding our regular meetings online until we can safely return to the office. Here we all are on a recent Zoom call, and we will carry on working in this way for as long as this situation goes on.
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Exploring Acupuncture There does appear to be some evidence that acupuncture could help to alleviate the symptoms of both Raynaud’s and Scleroderma. Not all of this is anecdotal; with acupuncture described as a reasonable treatment option for Raynaud’s by one study. Other published research also seems to suggest that it has been shown to have therapeutic benefits for some participants living with Scleroderma as well as Raynaud’s. Acupuncture is an alternative treatment that comes from ancient, Chinese medicine. It is all about stimulating and balancing the flow of energy around the body to promote healing and wellbeing. During treatment, an acupuncturist will insert fine needles into the skin upon specific points of the body. Traditional Chinese acupuncture is a complementary therapy, meaning that it is not intended to replace prescribed medications, but can be used alongside these to complement their effects. There There are many alternative therapies available that may be helpful for are different people, and as ever, it is important to consult your doctor different types before trying anything new. of acupuncture. Western acupuncture Understanding acupuncture is often used following Traditional Chinese acupuncture is based upon the premise that Qi a medical diagnosis, (pronounced chee), an energy or life force, flows around the body, with the aim of along pathways called meridians. Meridians are linked directly to stimulating sensory the internal organs and systems of the body, and also connect the nerves to produce a acupuncture points where needles are placed during treatment. therapeutic effect, Traditional acupuncture is believed to improve wellbeing by such as pain stimulating and restoring this flow of Qi within the body. When the relief. body is healthy, Qi flows smoothly; however when this is interrupted or the Qi cannot flow properly, ill-health may result.
Acupuncture for Scleroderma “For pain relief, the needles can be placed directly to target and treat the actual site of pain” Lorna Withers, accupunturist In traditional Chinese medicine, it is Wei Qi that lies at the heart of the immune system. This is our protective, or immune Qi, that is said to circulate below the skin surface. When we are in good health, this helps to fend off disease. If Wei Qi is low, this process is affected, making us more susceptible to illness. Prevention is a key aspect of Chinese medicine, and it is believed that maintaining this balance promotes wellbeing. Acupuncture is widely used to treat rheumatic diseases with some reported success, although there is currently little published data in relation to Scleroderma. Although no large-scale trials have been carried out, some smaller studies have documented the possible therapeutic benefits of acupuncture for people with systemic sclerosis, including in relation to digital ulcers, respiratory function, fatigue and skin thickening. For the treatment of autoimmune conditions where the immune system is overactive, needles can be placed with the aim of triggering or enhancing the body’s natural ability to self-heal. Although this is a holistic therapy believed to restore balance within the body, acupuncture can also take a targeted approach, based upon the premise that the process of self-healing can be guided with precision directly to where it is needed, according to the points where the needles are placed. For example, A study from 2014 treated Scleroderma patients with gastro-intestinal involvement by using a TENS machine on specific acupuncture points, with favourable results.
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Acupuncture has also become a widely-recognised intervention for relieving chronic pain. The reported analgesic effect is thought to be partly due to the stimulation of endogeniods opiods, the body’s own pain relief. Pain can also be treated by placing needles at local trigger points, for example upon the hands and the wrists for Raynaud’s pain. As well as treating pain points directly, needles may also be used to target the meridians, with the aim of helping to restore the flow of energy. If you decide to try acupuncture, talk to your practitioner about your condition and the different ways that this affects your life, since this may help them to understand Scleroderma and possibly tailor your treatment to maximise any benefit that you may feel afterwards.
Acupuncture for Raynaud’s phenomenon “To treat Raynaud’s, needles are placed on local points such as on the hand and the wrist, over a course of regular treatments.” Lorna Withers, acupuncturist There is some evidence that acupuncture may help to alleviate Raynaud’s symptoms with positive outcomes recorded in certain cases, including increased localised circulation and reduced inflammation. In 1997, a study from Germany described Traditional Chinese acupuncture as a reasonable alternative treatment for patients with primary Raynaud’s, after the majority of participants experienced a significant improvement. Although the data does seem to suggest that acupuncture has the potential to help treat Raynaud’s, the fact is that relatively little research into the extent of its efficacy has been published, and no systematic reviews have ever been carried out. More research is therefore needed to look in depth at the possible In a study from therapeutic benefits of acupuncture for people living with Raynaud’s 2012, a 30-yearas well Scleroderma. In the meantime however, the evidence old woman with primary appears positive, so it may be worth a try.
Raynaud’s was treated with acupuncture, with twice-weekly Helping acupuncture work for you sessions over a two-month period. Improvements were If you are considering trying acupuncture for the first time, recorded in pain severity, joint think carefully about what you would like to get from your treatment before you book. Different acupuncturists work stiffness and skin colour; and in different ways, and it is important to choose carefully to researchers also noted that ensure that you get the maximum benefit. Do not be afraid acupuncture might have to ask if the practitioner has any experience of treating your an anti-inflammatory condition or symptoms. Even if we assumed that acupuncture effect. could help, its effectiveness could still be dependent on your therapist understanding Scleroderma and its impact.
Some practitioners will place the needles and then leave the room for most of the session. You may prefer this approach if you wish to practice relaxation or meditation during this time. Others may stay with you after the needles are placed and use the time to provide a safe space to talk about your condition or any health or emotional issues that you may be dealing with, that could be affecting your overall wellbeing. It is important therefore to talk to the practitioner about what you can expect from your appointment before committing to the booking. If you are unsure, it may be best to hold off and try someone else, since it is important that you are comfortable with both the service and your surroundings in order to get the most out of your appointment. Acupuncture is sometimes available on the NHS, however in practice people often pay privately for treatment. A session could last from 15 minutes to around one hour depending on your practitioner and in general, a course of several treatments is likely to be more beneficial than one single session.
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Battlefield acupuncture - the ultimate alternative pain relief? Battlefield acupuncture was originally devised by the American military and as the name suggests is used in combat situations for acute pain relief. Battlefield acupuncture works by affecting the pain reception areas within the brain, re-routing the neural pathways and altering the ways in which the brain and the body respond to pain. It places extremely fine, gold-plated needles upon specific points on the ear. There are over 300 such ear-points, and during treatment the needles will be placed upon five corresponding points within each ear. Brain scans of people receiving this treatment have demonstrated changes in the brain once the needles are placed. Needles can remain in place in-between treatments for a longer-term effect.
Acupressure Acupressure uses a technique that is similar to acupuncture and aims to restore the flow of energy through the body without the use of needles. It involves applying pressure using the thumbs or fingers upon targeted acupuncture points, in order to relieve symptoms and improve wellbeing. Some practitioners will combine acupressure with acupuncture during treatment, depending on the situation.
Moxibustion Moxibustion is a non-invasive therapy that works by warming up targeted areas of the body. It is believed that this will increase the flow of energy, restoring health and wellbeing. Moxa is made from a plant that is grown in China and other parts of Asia. When the moxa is burned, it gives out a form of deep heat that is believed to safely penetrate the human body. Over a course of treatment, this heat builds up within the body and helps to alleviate symptoms. The practitioner will heat the moxa until it glows, and place or move it close to the skin of the affected area, with no direct contact so there is no risk of burning. With thanks to Mark Bovey and Ann Gordon of the British Acupuncture Council for their support in producing this article. For more information or to find a practitioner, please visit acupuncture.org.uk/
Lorna Withers
References Appiah et al., “Acupuncture and Raynaud’s
Having been in practice for over two Disease”, J Intern Med 1997 (Feb); 241 decades, Lorna Withers is a highly experienced (2) Feb: 119–124. Karatay S., Uzkeser H. acupuncturist who runs Essex Acupuncture, a longBeneficial Acupuncture Treatment For Systemic Sclerosis which was Nonestablished practice located in South Essex. Lorna Responsive To Medications. Acupunct offers a range of effective treatments that combine Electrother Res. 2015;40(3):205-214. traditional Chinese acupuncture and moxibustion. Karatay S., Uzkeser H. Beneficial She has also added the newer pain relief technique of Acupuncture Treatment For Systemic battlefield acupuncture to her expertise. She has also Sclerosis which was Non-Responsive To Medications. Acupunct Electrother undertaken training with the Upledger Institute in the Res. 2015;40(3):205-214. Maeda M., practice of craniosacral therapy which she combines Ichiki Y., Sumi A., Mori S.. A trial of with acupuncture to effectively treat babies, children acupuncture for progressive systemic and adults. We are incredibly grateful to Lorna for sclerosis. J Dermatol. 1988;15(2):133her support in producing this article. 140. Sallam, H.S., McNearney, T.A., Chen
J.D,. Acupuncture-based modalities: novel alternative approaches in the treatment of gastrointestinal dysmotility in patients with systemic sclerosis.Explore (NY). 2014;10(1). Urruela, M.A., Suarez-Almazor, M.E. Acupuncture in the Treatment of Rheumatic Diseases. Curr Rheumatol Rep. 2012 Dec; 14(6): 589–597. Komori et al., Microcirculatory Responses to Acupuncture Stimulation and Phototherapy, Anesth Analg. 2009 Feb;108(2):635-40. Kavoussi, B., Ross, E. The Neuroimmune Basis of Anti-Inflammatory Acupuncture, Integr Cancer Ther 2007 Sep;6(3):2517. Appiah et al., “Acupuncture and Raynaud’s Disease”, J Intern Med 1997 (Feb); 241 (2) Feb: 119–124. Omole, F.S., Lin, J.S., Chu, T., Sow, C.M., Flood, A., Powell, M.D. Raynaud’s phenomenon, cytokines and acupuncture: a case report, Acupunct Med. 2012;30(2):139-141
For more information, please visit essex-acupuncture.co.uk.
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Into the Unknown – Navigating the Emotional Journey Towards a ‘New Normal’ By Dr Jo Daniels Dr Jo Daniels is a Senior Lecturer in Clinical Psychology and Chartered Clinical Psychologist at the University of Bath. Jo works clinically with people with long-term health problems using cognitive behaviour therapy, and conducts research looking at anxiety and psychological distress in medical settings. Alongside her research, Jo uses social media and other mediums to destigmatise mental health in medical conditions and engage the public in thinking about ‘normal’ psychology of health. In these uncertain times it is difficult to remember what ‘normal’ life was like, and even harder to imagine the ‘new normal’ that may lie ahead. This may make it challenging to adjust to changing circumstances, particularly when our usual coping strategies may not be available in the same way. For people living with long-term health conditions, getting out and about, socialising, taking regular exercise and maintaining independence are all important factors in what keeps us psychologically healthy. Over the past few months however, many of these things have become much harder, which has impacted considerably on our health and wellbeing. Loneliness, boredom, anxiety and frustration are common when people are isolated for long periods. It becomes worse if we struggle to access advice or food supplies, or if we feel stigmatised; factors which have affected many people who are shielding or self-isolating. These initial feelings can sometimes develop into low mood or anxiety, which may then cause problems when we try to achieve even basic tasks.
Ways to promote positive psychological wellbeing during uncertain times Accept your feelings The most vital thing to keep in mind is that feeling anxious, worried and a little low is common during this unsettling time. It helps to remember that fear is a normal response to the abnormal situation we now find ourselves in. Try to be self-compassionate and allow yourself to feel the complicated emotions that come along with change and uncertainty. Expression of feeling is healthy, and also necessary in helping us understand the root of what is troubling us.
Social connection Tackling feelings of loneliness and low mood early on is important in protecting against long-term difficulties. Whilst we may have to be alone to stay safe, we must take action to keep active and connected to others. This is key in maintaining positive mental health. The evidence tells us that it is the depth rather than the frequency of contact with others that is important, so keep reaching out and deepening connections – these relationships will persist and feel stable at times when nothing else does. Talk to people who know you, people who understand and make you feel cared for. This can help in maintaining perspective when things feel out of control.
Exercise and activity Regular exercise, relaxation and a good sleep routine help with the regulation of different hormones in the body. This helps to get rid of excess adrenaline from anxiety and increase positive endorphins, helping us to think more clearly after a good night’s sleep. Try to exercise every day, within your limits and in a way you enjoy. No exercise is sustainable if you find it dull or hard work - find music to motivate you and be creative: dancing, cleaning and gardening will also improve mood. Relaxation is important and a
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very personal choice: for some it is mindfulness and an evidence-based approach to stress reduction, whereas others find that music, reading or silence are more effective. Try different strategies and incorporate one or two relaxing periods per day - you will reap the benefits quickly. The more enjoyable activities we do, the better we feel and the more we are inclined to do; and this cycle is a great contributor to healthy emotional wellbeing. Keeping active helps both anxiety and low mood. When feeling anxious or depressed we are inclined to retreat or avoid when faced with difficult situations. This can lead to a negative spiral which is hard to escape. Avoidance has a tendency to contribute to feelings of anxiety and low mood in the long run, despite feeling relief at the time. Be aware and accept this desire to retreat; but maintain your daily routine as much as possible.
Taking the first steps Anxiety may peak when normal activities resume in some unfamiliar ways. This can act as a barrier to transitioning back into the world after months indoors, especially for people with health conditions that require monitoring, or may flare-up. For many of us, these first steps will understandably be difficult. The following suggestions are based on cognitive behavioural therapy (CBT), and are designed to help in easing back into regular activities, such as going shopping or attending medical appointments:
• Approach re-integration into the outside world in a gradual way. It may be more anxiety-provoking to go straight into a busy hospital environment or supermarket after being indoors for months. Start by walking around the block and build up from there, as you feel more confident. • Call ahead to ask what will be different about your hospital visit. Ask questions to give you a sense of safety (you are unlikely to be the first person asking) and seek advice on areas that concern you. Familiarise yourself with any new procedures now in place. • Prepare for your trip and any difficulties that might arise, seeking social support where necessary. Hospital appointments and shopping trips can be stressful in normal circumstances; so within the context of a pandemic it is natural to feel more anxious. Do not hesitate to seek support in whatever form feels helpful and comfortable. • Remember to accept anxiety as a normal and often helpful response. It mobilises us to wash hands, stay vigilant and keep safe distances. Anxiety is likely to peak and pass, and regulation of breathing can help. Evaluate your experiences, and consider what you might do next time. Treat yourself with compassion if things do not go according to plan. • Focus on the positives: these changes represent the lifting of restrictions, increased independence and getting our lives back. Social contact can resume, hobbies may be revisited and needs better met. While precautions may be in place and vigilance necessary, this may be viewed as a very positive shift – so keep this in mind to help motivate those first steps out of the door.
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These adaptive strategies are known to be helpful when faced with challenging circumstances and can be applied in different situations. Sometimes however, professional help is needed to support the transition towards doing necessary activities again. If you are struggling with your mental health it is important to use strategies that you find effective. If these are not enough, please get in touch with your GP or mental health provider. You do not need to struggle alone. NHS mental health services are aware and prepared at this difficult time, and many offer alternatives such as video or telephone calls where necessary.
Cognitive Behavioural Therapy (CBT) is an evidence-based approach commonly used when working with mental and physical health problems. It is a brief, goalorientated approach that supports individuals towards long term self-management of their symptoms, so is particularly suitable for sustained conditions and is endorsed by NICE guidance. Put simply, CBT is based on this notion: how and what we think about things, what influences our feelings, our physiology and most importantly, the way we respond to situations, i.e. how we behave. These four aspects interact to shape our emotional wellbeing. CBT considers the way we think about what happens around us as being key to our psychological wellbeing. Often in CBT we are inviting people to ask themselves, how can I understand or respond differently in a way that might mean I feel physically or emotionally better? CBT is available on the NHS or privately, and there are also free resources online.
Further information and support SRUK Helpline: 0800 311 2756 SRUK mindfulness and relaxation pages: sruk.co.uk/scleroderma/scleroderma-and-your-body/mind/ Jo Daniels recently presented our Facebook Q&A, which can be viewed at any time: sruk.co.uk/mental-emotional-wellbeing/ She has also written extensively on mental wellbeing during the coronavirus pandemic. If you would like to read more, the following articles are available online: Coronavirus: how to stop the anxiety spiralling out of control https://theconversation.com/coronavirus-how-to-stop-the-anxiety-spiralling-outof-control-133166 Coronavirus: the psychological impact of ‘shielding’ indoors – and how to move on https://theconversation.com/coronavirus-the-psychological-impact-of-shieldingindoors-and-how-to-move-on-140566 External resources: Mind information line 0300 123 3393 Anxiety UK Helpline
03444 775 774
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Our Helpline and Support Services The SRUK Helpline Our free Helpline is available to enable anyone who is affected by these conditions to receive support. There are an estimated 10 million people in the UK who have Raynaud’s and around 19,000 with some form of Scleroderma and everyone has an individual experience of living with these conditions. The Helpline operates 365-days-a-year, from 9am-7pm. We currently have nine volunteers, who man the Helpline on a rotational basis: Amelia, Brigid, Kim, Liz, Jean, Katherine, Susie, Karen and Pam.
Helpline: 0800 311 2756
The aim of the Helpline is to empower and inform the caller in a supportive way. Our team update their skills regularly, and as an accredited member of the Helplines Partnership we will always conform to their standards of excellence. Although our volunteers are not medically qualified and cannot give medical advice or opinions, they have all been affected by Scleroderma and Raynaud’s and will listen positively and try to help with your particular enquiry. “Volunteering on the Helpline was about giving something back to the community that had been so supportive to me when I was first diagnosed with diffuse Scleroderma 15 years ago.” Amelia, Helpline volunteer When it comes to rare conditions such as Scleroderma, a particular challenge is finding reliable, highquality sources of information. This was one of the reasons that Susie decided to volunteer: “We can signpost people to reliable and accurate information and reassure them that help and treatments are available for Raynaud’s and Scleroderma, and that things can be done to help them manage and live with their condition. Knowledge is power and it’s great to share our knowledge with the people we help.” Brigid, another of our amazing volunteers, told us: “I have had Raynaud’s for about 30 years and was diagnosed with systemic sclerosis in 2013. I have been volunteering on the Helpline since Autumn 2018. For most, the opportunity to discuss their concerns with someone who knows what they are talking about is a relief. Those callers who do not have internet access say the Helpline is particularly important.” We are always keen to hear from people who understand Raynaud’s and/or Scleroderma, and who may be interested in volunteering on our Helpline.
Keep in Touch Support Service Our new Keep in Touch Support Service is a telephone-based service that is designed for anyone who is shielding or self-isolating. You can now receive a regular phone call to chat with one of our volunteers about absolutely anything, 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. Calls generally last for around 25 minutes, and it is up to you to decide how often you would like to be contacted. If you or someone you care for wishes to use the service, please call our main number on 020 3893 5998 or email info@sruk.co.uk.
Local Support Groups Our local Support Groups are there for our community at a local level, by organising meetings or making connections via telephone or email. Please see p.22 for more information.
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 who are affected by Scleroderma and Raynaud’s, 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 https://healthunlocked.com/sruk.
Social Media Join together and support each other through social media. Start a discussion, share tips and read advice from others on our Facebook and Twitter pages.
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Our Support Groups Our Support Groups throughout the UK are continuing to offer ongoing support to people living with Scleroderma and Raynaud’s, as well as to their partners, families and friends. Our amazing group leaders have found creative new ways to help keep everyone connected throughout the coronavirus crisis - until we meet again. Some groups provide advice and information by email in response to member questions. Others are holding telephone meetings for the time being until it is safe to meet in person. Some combine all of the above, based on what their members need. Each group is run by a support leader who is a dedicated volunteer and has been affected by these conditions. In this edition, we take a look at the support network in Scotland. Scleroderma Support Groups in Scotland – The Story So Far There are two Support Groups in Scotland. The Edinburgh Group is run by Anne Hogan, who was diagnosed with Raynaud’s, Scleroderma and fibromyalgia in 1996. The group is designed to provide support to anyone who is affected by these conditions and to help promote awareness. “I hope to be able to support others going through the difficult time of diagnosis and help promote awareness of Scleroderma and Raynaud’s in the Edinburgh\Lothian region.” Anne Hogan, Support Group founder In the Scottish Highlands, The Scleroderma & Raynaud’s Support in Scotland Facebook group was created by Lorraine Jack in 2017, when the chat group became increasingly hard to manage after it exceeded 20 members. She then started the Scleroderma Support Group in Scotland, and the membership has quickly grown to 117 and counting. Lorraine has systemic sclerosis and ILD with scl70 antibodies; and previously had Raynaud’s phenomenon. “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 Jack, Support Group founder The Support Groups are designed to reach out to affected people in Scotland, and everyone is welcome. They provide a safe space that offers friendship and ongoing support; and enable people to share knowledge, information and personal recommendations with one another. Most people come to the groups for friendship and advice. No subject or question is off-limits, and members can ask about anything, from recommendations for medications or specialists; to opinions on whether certain symptoms are actually typical of Scleroderma, although as ever it is always advisable to speak to a GP or rheumatology nurse with any medical concerns.
Lorraine Jack
Normally, there would be regular meetings, plus various catch-ups in local areas that anyone is welcome to join, involving just a chat over a drink or some lunch. These are usually upbeat and full of humour, although if anyone does have particular concerns, these can of course be shared. Although at the time of writing it is still not possible to meet face-to face, the youngest member of the Highlands Group has been holding weekly Zoom chats, which have proved to be a great success in enabling everyone to keep in touch.
Find your nearest Support Group To find out where your nearest Support Group is, please call us on 020 3893 5998 or email info@sruk.co.uk. Local Support Contacts Amersham
Marilyn York
Norfolk
Lucy Reeve
Bedfordshire
Rita Boulton
Northern Ireland
Una Gillespie
Birmingham
Avtar Gill
Portsmouth
Tracey James
Edinburgh
Anne Hogan
Scottish Highlands
Lorraine Jack
Exeter
Mike Corbett
South London
Celia Bhinda
Leeds
Chris O’Hora
Worcestershire
Shirley Lynch
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For Scleroderma Awareness Month we launched a Virtual Relay Walk. Scleroderma associations all over the world have been organising annual walking events, and this year we had to do things a bit differently. We launched the Virtual Relay Walk inspired by the efforts of Una Gillespie. The format was straightforward – do your walk your way, whether it’s two steps in your house, 10 in your garden or 10,000 in your local area – everyone has different challenges to overcome. You could walk alone, with members of your household or with friends at a social distance. Once your walk was completed you passed the baton on – nominating friends, family or colleagues. We can all walk together even though we are apart. The virtual relay walk was launched in June but it isn’t over – with the promise of some nice weather, you can still organise a walk. Help us reach our goal and raise £19,000 for the 19,000 people in the UK currently diagnosed with Scleroderma.
Una’s story During May, Una Gillespie walked 10km around the perimeter of her house every Saturday for four weeks. She was diagnosed with diffuse Scleroderma five years ago which affects her skin and internal organs including her lungs – so this really was a challenge for Una. She was motivated to keep going by her goal of helping us to fund research, information and support – with the particular aim of setting up a support group in Northern Ireland where she lives and has found that there is currently a lack of support. Una smashed her original £250 target and raised over £6,385. Her employer Taranto Ltd was especially supportive and donated £1,550, which is amazing and so vital to us. Una also recruited friends and family across the world to walk virtually with her and this inspired us to pick up the baton and keep the walking going with the SRUK Virtual Relay Walk.
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Thank you to everyone that has signed up or already walked, here are some of those who have taken up the baton:
Walkers so far Sara McAreavey walked 10km and raised £420. Our youngest walker, Edward aged eight, walked 110km over three weeks and raised £160. Daniela Coppola kept the baton going with her walk and raised £555. A brilliant effort from you all. Our cover girls in this edition of SRUK NEWS are fundraising friends Emily and Zoe, who completed their own sponsored walk through Hangers Way in Hampshire.
Their fundraising was inspired by Zoe’s mother who was diagnosed two years ago and Emily’s younger sister who has been living with the condition for three years now. They smashed their fundraising target of £1,200 and raised over £2,738 – congratulations to Emily and Zoe!
Home Fundraising Ideas Quiz crazy – All across the country people have been organising virtual quizzes with friends, family and colleagues. We have a handy pack with tips for making this a success, and we even have questions and answers all ready for you to use at your event. As social distancing rules start to change you can even combine face-to-face and online guests together! Whodunnit? As people start to look for alternatives to the quiz night, we have put together all you need to host a virtual Murder Mystery night – put your sleuthing skills to the test and raise funds for SRUK. Summer parties – You could host your very own summer festival, Last Night of the Proms celebration or a socially distanced picnic – whether you invite your friends or re-capture the neighbourhood spirit and hold a street front/back garden festival. You can have tents, nibbles and fun whilst still sticking to the guidelines and raising funds.
Jacob and Callum
For more information or to get involved, please contact our team by emailing fundraising@sruk.co.uk or calling us on 020 3893 5993. Alternatively, please visit sruk.co.uk/getinvolved/ 24
Fundraising Thanks
Whilst events have continued to be cancelled, our amazing supporters have been staying active and coming up with creative ways of fundraising, from baking a Eurovision cake to sewing masks for donations. Thank you to everyone that donated to our coronavirus appeal in the Spring edition of the magazine. We are very grateful that our community has continued to support us during these unprecedented times that have been so difficult for all of us. Below are just some of the stories from across our community – please do let us know if you would like to be featured in our next edition. The 2.6 Challenge
The 2.6 Challenge was launched by the London Marathon organisers due to the April event being postponed. We had several people take part and one of those was Nicki Hunt, who raised a total of £1,028, smashing her £260 target. Nicki has Scleroderma and has been shielding, so her home challenge was to take 26 minutes of exercise every day for 26 days by walking in her small garden, practising yoga and following online classes, along with anything else she could come up with. This was also a massive personal achievement for Nicki, as some days her body can go against her. Our youngest 2.6 Challengers were brothers Callum aged 10, and Jacob, six. Callum ran 260 laps of his garden and Jacob ran up and down the stairs 260 times. They raised £52 in memory of their grandad, who battled Scleroderma for most of his life.
Nicki Hunt
Big thanks to everyone for raising £1,378 collectively.
Running Connie Vallis wanted to keep up her London Marathon
training and she even enlisted her sister, Stacey, to run with her in October. To continue their training and fundraising they each ran a mile every day during June, and have so far raised £2,900, with lots more events planned. They are running in memory of Connie’s mother-in-law Sharon. Thank you to Connie and Stacey for all your hard work.
Caitriona McHugh has kept busy and continued with her
brilliant fundraising efforts. Shortly before lockdown, she ran the Hampton Court Half Marathon – despite fracturing her wrist a month before! A dedicated runner, she carried on running during lockdown and completed an incredible 50 miles in a week. She completed this Goliath of a challenge in memory of her Aunty Mary who had Scleroderma and Raynaud’s and has raised over £360. She is now planning to run the Mid-Sussex Virtual Race!
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Connie and Stacey
Emma Reynolds was planning to run the Liverpool Rock n Roll
Half Marathon in May, now postponed until October. Emma wanted to find a way to keep fundraising for SRUK during lockdown, so she decided to complete the half marathon distance on her own, by running a local route near her home. She is fundraising in memory of her Nana who died 24 years ago with Scleroderma and Raynaud’s, so we wish her all the best with her efforts – she’s already raised £171 of her £200 target!
Other Fundraising
Emma Reynolds
Raffolux - A special thank you goes to the members of Raffolux – the luxury raffle website. SRUK was nominated as Raffolux’s Charity of the Month to mark Scleroderma Awareness Month. Raffolux donated £403 to us and we are very grateful for their support.
Congratulations to Stephen Rooney – who became
champion of the virtual Big Railway Bakey Cakey competition. Stephen won 40% of the vote with his spectacular Eurovision Victoria Sponge Cake. He nominated SRUK to receive the £300 prize. He also raised over £65 from friends and family donating on Facebook after he posted news of his win.
Stephen’s cake
Contact us if you would like to find out more about how you can get involved. fundraising@sruk.co.uk / 020 3893 5998 26
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 we are always striving to achieve more. If you have an idea as to how SRUK can further support the community then we would love to hear from you.
Your Magazine, Your Way Thanks to everyone who provided feedback on the last issue of the magazine. We know that not all comments have been covered in this issue but we will be working hard to cover your feedback in future issues. Your feedback is really important to us. If you have a comment or suggestion on how we can improve future issues then call our team on 020 3893 5998 or email: info@sruk.co.uk
Donate to us through our website www.sruk.co.uk by clicking the donate button or by phoning our friendly team on 020 3893 5998 using your debit/credit card. Your card details are not stored by the charity and the systems used to process your payment are secure.
Scleroderma & Raynaud’s UK Bride House, 18 - 20 Bride Lane, London EC4Y 8EE We hope you enjoyed your edition of the SRUK magazine. If you have finished with your copy then please do pass it on to a friend or your local GP surgery. Alternatively pop it into your recycling and help us look after our planet.
www.sruk.co.uk Helpline: 0800 311 2756 Office: 020 3893 5998 @WeAreSRUK
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Registered Charity England and Wales No 1161828 © Scleroderma & Raynaud’s UK 2018
