SRUK Winter 2021 Member's Magazine by Scleroderma & Raynaud's UK

Issue 20 Winter Edition 2021

SRUK NEWS Thank you to all our amazing supporters, including Alan Hall (pictured), who has raised £2,075!

Know Your Gut: Eat well to feel better?

Does Diet Make a Difference? Stories from our community

Measuring the effectiveness of new treatments in clinical trials: Outcome measures explained

Knowledge is Power: Making new research accessible to all

Services Directory

Welcome

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

Keep in Touch Support Service The Keep in Touch Support Service is a telephone-based service that is designed to provide extra support during times like these. You can receive a regular call from one of our volunteers, to talk about absolutely anything, and the service will be available for as long as this situation goes on. Our volunteer will arrange to make the call at an agreed time on a regular basis: every week, fortnight or month. If you or someone you care for would like some more information, please contact us.

Local Support Groups Our local Support Groups are still active and are working hard to keep people connected at a local level. If you are interested in joining a group or you would like to find out more, please call us or send us an email, and we will be happy to put you in touch with your local support contact. Please turn to page 19 to read about the SRUK Support Group Midlands.

WELCOME TO THE LATEST EDITION OF SRUK NEWS

Our online community

Dear Supporters

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

It may not be the start to the year that any of us quite expected, but we want you to know that we will be with you every step of the way. Together we will get through this and over the coming months we will:

Social media

• Increase the number of Helpline volunteers

Join together and support each other through social media. Start a discussion, share tips and read advice from others on our Facebook, Twitter and Instagram pages.

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

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

• Increase the number of Support Groups

• Expand our Keep in Touch service • Bring you the most up-todate information on COVID-19 and the vaccine • Run a series of webinars and a Virtual Conference While we head into 2021 with a degree of hope and optimism, it’s important to take a moment to reflect on the year just gone; to look at what we achieved and what we learnt. It certainly reinforced the power of community for me and how when we come together, we are so much stronger, so I want to say a massive Thank You to our loyal SRUK community, for your continued support and engagement, despite the challenges we all faced. In March last year, we worked quickly to gather information about COVID-19 and as the year progressed, we increased the information provision on the website, covering different aspects related to COVID-19: from health and wellbeing to guidance on employment issues. Our Support Groups have increased from nine to 13, with several others in

development and we now have 15 Helpline volunteers and the support of a Specialist Nurse. Together with our partners in the Rare Autoimmune Rheumatic Disease Alliance, we published a report entitled ‘Chronic Crisis’ about the impact of COVID-19 on people with rare autoimmune rheumatic diseases. The report was downloaded over 500 times and we secured national media coverage in The Guardian and Mail Online. We also engaged the support of several MP’s and MSP’s with Parliamentary Questions about support for shielding. We hosted a virtual roundtable bringing together key influencers from across the healthcare system, researchers and patients, to discuss what high-quality, coordinated care should look like in the post-COVID context. The output from the meeting will be a policy paper setting out how we can redesign services to improve care for people with rare autoimmune rheumatic diseases.

Contents 4.

Doc Spot: your medical questions answered

Research: what’s the outcome?

Research: knowledge is power

SRUK Shop

12.

Know your gut

16. Does diet make a difference? Your stories 19. The SRUK Support Group Midlands 21.

Helpline update

22. COVID-19: Information and support 23. Raynaud’s Awareness Month 2021 26. Fundraising Heroes

Last year, despite being in lockdown, we managed to keep moving forward with our programme of work across services and research. We hope that 2021 will be as productive and as always, your support remains vital. Wishing you all the very best for 2021,

Sue 3

Your medical questions answered

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

Doc Spot

I am experiencing significant gastrointestinal problems, I would like to ask if there is a solution or treatment that might work and help me to live a more normal life?

The gastrointestinal tract extends between the mouth and the anus and is one of the internal organs most frequently affected in systemic sclerosis. For most patients, the first symptoms relate to a sensation of food sticking during swallowing and over time acid reflux and heartburn may also develop. The lower bowel is also often affected leading to constipation or diarrhoea.

In some patients later in the course of the disease there may be difficulty with controlling the bowels with leakage or soiling. In addition, there can be overgrowth of bacteria in the intestine causing abdominal bloating. All these symptoms are difficult, and it is important to discuss them with your family doctor and scleroderma clinical team to have the best treatment. Heartburn can be well-controlled by drugs suppressing stomach acid (e.g. Omeprazole and related drugs) and there are other measures that can treat each of the symptoms outlined above. Although difficult to cure, the intestinal problems in systemic sclerosis can often be improved.

Can dietary changes help with some of the GI symptoms in SSc? Are there any foods that should be avoided?

Although there is no specific diet recommended in systemic sclerosis many patients describe improvement in symptoms with dietary adjustments. Spicy and hot foods may aggravate symptoms of heartburn and all food should be chewed well and consumed with fluids if there are swallowing difficulties. Some patients with bloating, diarrhoea, or constipation report that their symptoms improve from excluding wheat; whereas others may benefit from a reduction in dairy or red meat. However, it is important to maintain a good dietary intake to avoid becoming malnourished. Many scleroderma patients have a reduced appetite and so there is the risk of losing weight. If that is severe then advice from a dietician may be helpful.

Is the new COVID vaccine definitely safe for people with SSc and other autoimmune conditions? I am feeling extremely anxious about taking this as I am afraid of having a bad reaction or making things worse? There seems to be more than one type of vaccine, so which one would be preferable for someone in my situation, and will I get the choice?

The vaccines for COVID-19 are a major medical advance and a critical part of tackling the current pandemic. Once a vaccine has been approved by the medical regulators (e.g. MHRA in UK), then the effectiveness and safety will have been thoroughly reviewed. Of course, no medication or vaccine is completely without risk, but the regulators will have carefully assessed this as part of their review before approval. There is no evidence that systemic sclerosis patients are more likely to have any adverse reactions. They are however potentially at an increased risk if they develop COVID-19, so my strong I suffer from frequent Q general recommendation is to have back pain that seems to “Although there the vaccination if it is offered. be getting worse as I am Live vaccines such as Yellow is no specific diet getting older. I also have Fever should be avoided in all recommended in Raynaud’s and patients on Scleroderma. I would like systemic sclerosis immunosuppression or with a to see an osteopath many patients weakened immune system. So, privately about the back describe improvement if any live vaccines are trouble, is this safe with in symptoms with developed for COVID-19 in the my SSc? future, they may not be dietary adjustments.” Back pain is very appropriate for systemic sclerosis A frequent in the general patients. The effectiveness of all population and unlikely to be the different vaccines being related to Raynaud’s or developed appears comparable and so at Scleroderma. Therefore if the back pain present all approved UK vaccines should be is severe or getting worse then you should considered equal. consult your doctor and discuss the symptoms. Sometimes an X-ray, or an MRI or CT scan of the Is frequent vomiting typical in SSc spine is recommended, to diagnose the cause Q patients? If so, what is the cause and is and exclude complications. there an effective treatment out there? This can help to plan treatment. Persistent back Vomiting can occur in systemic sclerosis pain should always be investigated to exclude A due to inflammation in the stomach any serious underlying cause. There is no reason (gastritis), or slow emptying of the stomach as why manipulative treatment should not be used part of the general slowing of intestinal motility in Raynaud’s and Scleroderma, but it is always in the disease. It can be treated by anti-sickness best to discuss this with your family doctor or mediation and adjusting the portion size, timing clinical team if you have any concerns, and if a and frequency of meals. However, any new or treatment makes the back pain worse, then it severe symptoms in systemic sclerosis should be should be discontinued. discussed with your clinical team in case further investigation, such as an endoscopy (gastroscopy), is required.

Doc Spot

Research

“IT IS NOT COMMON TO HAVE GENERALISED NERVE PAIN IN SCLERODERMA, ALTHOUGH THE CONDITION CAN BE ASSOCIATED WITH PAIN DUE TO POOR BLOOD SUPPLY TO THE EXTREMITIES FROM RAYNAUD’S PHENOMENON OR BECAUSE OF INFLAMMATION IN THE SKIN AND CONNECTIVE TISSUE.”

I am experiencing what feels like nerve pain throughout my whole body, is this common with scleroderma and can anything be done to help? I have also recently started experiencing difficulty walking, could my Raynaud’s or Scleroderma be the cause of this?

WHAT’S THE OUTCOME?

It is not common to have generalised nerve pain in scleroderma, although the condition can be associated with pain due to poor blood supply to the extremities from Raynaud’s phenomenon or because of inflammation in the skin and connective tissue. Some patients with systemic sclerosis or other connective tissue diseases may develop irritation or damage in the sensory nerves, but this is uncommon. You should discuss these symptoms with your family doctor or clinical team so that they are aware and can advise you on further investigations and treatment.

Clinical trials are the only way to ensure that treatments for Raynaud’s and Scleroderma are effective. But how do we judge whether a treatment is working? The ‘outcome measures’ and ‘endpoints’ are crucial in this process, and SRUK funding is playing a key role to improve the measures used for patients with scleroderma.

I have limited scleroderma and I am suffering from severe constipation and ongoing episodes of diarrhoea because of this. What is happening inside the body to cause these symptoms? Are there any effective ways to slow down this process, or to stop it from happening altogether? If the problem persists can it result in colon cancer?

As discussed in the answers to other questions above, altered bowel function is common in systemic sclerosis and can occur in limited scleroderma. The combination of constipation and diarrhoea is common but any new change in bowel habit should be discussed with your family doctor or clinical team, because it is important not to miss other possible causes. There is no increase in the risk of colon cancer in scleroderma but there is the risk of delayed diagnosis if relevant symptoms are blamed on the scleroderma and so other tests are delayed or postponed.

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

MEASURING THE EFFECTIVENESS OF NEW TREATMENTS IN CLINICAL TRIALS

Outcome measures are needed to show us how well participants respond to drugs during clinical trials. COVID-19 has improved public knowledge of the trials process and its necessity for the approval of new treatments. All clinical trials are carried out to a strict and detailed protocol, which includes information on the outcome measures to be collected and the endpoints to be examined. These are fundamental for study design, and vital in showing that the treatment is effective and warrants approval for use; even determining how many participants to involve in the trial. But what are outcome measures and endpoints? And why are they so important in treating scleroderma?

and at the end. The ‘gold standard’ outcome measure used in diffuse cutaneous systemic sclerosis (dcSSC) is the modified Rodnan Skin Score (mRSS). many clinical trials use a change in mRSS at treatment end as an endpoint, to show that the drug is effective.

response index for limited scleroderma (the CRISTAL index). There is a paucity of trials of new treatments for limited cutaneous systemic sclerosis (lcSSC), owing to a lack of relevant outcome measures. The CRISTAL study has the potential to change this.

The mRSS is a good measure of the effects of scleroderma treatments on affected skin. However, a new medication could offer other potential therapeutic benefits as well, which may not be obvious using mRSS alone.

In a separate project, Drs Del Galdo (UK), Khanna and Furst (US) are working on improving the CRISS, making it more reflective of how patients with dcSSC feel, function and survive. As well as the potential benefits for patients, this is also valuable to regulators in the approval of new therapies.

To help overcome this, a ‘composite endpoint’, called the Combined Response Index in SSc (CRISS), was developed in 2016, using data from 150 patients with dcSSC. This considers multiple endpoints of multiple outcome measurements and combines them to deliver a score that indicates a more holistic response to treatment.

Outcome measures and endpoints are closely linked. Outcome measures are changes in a patient’s status in response to the treatment; and many are collected during a clinical trial. Often, one or two of these measures are chosen as an endpoint.

In collaboration with The World Scleroderma Foundation, SRUK is funding two exciting international projects, which aim to understand the outcome measures that are mutually important to both patients and clinicians.

Endpoints are examined at defined timepoints e.g. by comparing the status of a patient at the start of treatment

Drs Alain Lescoat (FR) and Dinesh Khanna (US) are developing a combined

The impact of this work could be far-reaching, providing more reliable indicators of whether new treatments are working and showing therapeutic benefits for patients. We will keep you updated as these projects progress.

Research

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KNOWLEDGE IS POWER

MAKING SCIENTIFIC RESEARCH ACCESSIBLE TO EVERYONE Scientific research is key in developing knowledge and understanding of Scleroderma and Raynaud’s; along with effective treatments. Often, crucial new developments are not easily accessible, which can impact upon progress. Along with our partners at the Association of Medical Research Charities (AMRC), SRUK is working to change this. As a member organisation of AMRC, SRUK has recently joined its OpenResearch Platform. This will enable SRUK-funded researchers to publish new information and share knowledge at a faster pace.

upon opportunities to develop ideas further. There are other pitfalls within the current system, including: • It is costly to publish research articles through traditional journals. • It prioritises positive results, since only success stories are submitted and published. Many failed experiments, so called ‘negative data,’ are never publicly shared, so other researchers may inadvertently take a costly trip down the same road. • Journals cannot meet the demand for publication. Often only the sexiest articles or those with broad appeal are published, with more niche topics losing out.

Translating new ideas into effective treatments depends on a multi-step pathway of scientific research. This is underpinned by the sharing of ideas through research articles published in prestigious industry journals.

• Articles are often hidden behind a paywall, making them inaccessible to most people with an actual interest in the charity funding the work and its supporters - the patients themselves.

The first scientific journal was created over 300 years ago by the Royal Society; to record member discoveries and facilitate the exchange of new knowledge. Burgeoning post-war investments led to rapid scientific advances, and scientific publishing quickly evolved into a fully-fledged industry.

OpenResearch aims to address this. It offers researchers a fast yet credible route to publication. This is less costly and supports the publication of ‘negative data,’ which enables better stewardship of resources. ‘Open Access’ is designed to enable patients, funders and other researchers to freely access research, which is vital for scientific collaboration.

For decades, the publishing process has remained more-or-less unchanged. Researchers test their idea or ‘hypothesis’ through a series of rigorous experiments. They collect data and make conclusions before presenting their findings within a scientific article and submitting this for publication: e.g., to The Journal of Rheumatology. The editor then reviews this for how it ‘fits’ with the Journal’s objectives, as well as for its novelty. If successful, it will then pass to ‘Peer Review’ by fellow scientists or clinicians, to confirm that it is robust and the conclusions are valid; before being either accepted for publication or rejected.

The AMRC is not alone in this endeavour. Other large funders including the Gates Foundation and the Wellcome Trust have also created similar initiatives, with the goal of accelerating the pace of scientific advancements. We hope that AMRC OpenResearch will encourage a greater knowledge exchange surrounding Scleroderma and Raynaud’s in 2021 and beyond.

SRUK SHOP Keep warm and comfortable through winter and spring with the range of high-quality products available from the SRUK Shop. Remember that we are always open, so please visit us at srukshop.co.uk to see the full range that we offer.

Silver Gloves These gloves are seam free, flexible and will allow you to operate your mobile device and visit a cash point without having to remove them. Made using 12% silver thread woven on the inside, they have light stretch for improved fit and have been designed to accommodate swollen fingers. Available in 8% or 12%. (NB 8% = silver, 12% = black). xs, s/m, l/xl

12% = £23.50 2-pack = £44.00 8% = £10.99 2-pack = £22.00

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It often takes several months for a paper to be published. This slows the rate at which discoveries are shared publicly and impacts 8

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Available as short £12.99, and long £14.99 Also available in 3-packs: short socks: £32.99, long socks: £38.99

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Silver Socks & Gloves

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Other Products SRUK Face Mask

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Self Care

KNOW YOUR GUT

into their bodies and more awareness of how outside factors (work, stress, relationships) can also affect their health.”

COULD YOUR DIET BE AFFECTING HOW YOU FEEL? Gastrointestinal (GI) involvement is very common among people with scleroderma, affecting around 90% of people living with systemic sclerosis (SSc). Symptoms vary from personto-person, ranging from difficulty swallowing and reflux, to severe constipation and diarrhoea. If untreated, there may be long-term complications. Treatment is therefore essential in managing GI involvement and crucial in slowing its progress; although there is also some evidence that diet could play a role in managing symptoms and improving quality of life.

About the gastrointestinal tract The GI tract runs from the mouth all the way to the back passage. It enables the intake, digestion and absorption of the food we eat, which is propelled along through muscle contractions in the wall of the gut. If you have scleroderma, thickening of the gut wall, along with the thinning (atrophy) of the muscles can slow things down. Excessive collagen produced within the affected areas leads to a breakdown in the muscles, meaning that the gut cannot work properly. Gut involvement may occur at any time, and any part of the 12

Dr Elizabeth Volkmann, MD, MS. Director: UCLA Scleroderma Program

Balancing bacteria

GI tract can be affected. Often, symptoms may progress over time.

Diet and nutrition Nutrition is always important in maintaining wellbeing and staying as healthy as possible. When we think about GI tract involvement in SSc, food and diet become even more significant, because these symptoms can often affect what someone is able to eat and when they can eat it. There is also a considerable body of evidence to suggest that making certain dietary changes may help to control symptoms, and many people (although by no means everyone) report that diet does indeed make a difference. Just as scleroderma affects everyone differently, there is no ‘one-size-fits-all’ approach and no single diet that is guaranteed to work. You may have to try more than one approach to find out what works for you.

Getting started keep a food diary Starting a food diary enables you to understand the relationship between your body and the food you eat, so start a new page each morning or evening and write everything down that you ate in the last 24 hours.

It is not always easy to remember everything, so this may help to show how certain foods may be affecting how you feel, for better or for worse, as well as what agrees with you and what probably does not. Track your symptoms every day and record how you feel whilst you eat, as well as afterwards and even a day or so later. Sometimes with scleroderma, foods may take longer to digest, so any reactions may be delayed. Consider noting not only your GI symptoms, but also your energy and mood that day, along with how you slept during the night. Although this may seem a little time-consuming at first, maintaining the food diary for four weeks will help to highlight any connections between what you eat and how you feel.

“Through guiding my patients through the process of making connections between how they feel in relation to what they eat, I have found that patients begin to develop more insight

Not all bacteria are bad for us; sometimes they actually help us to stay well. Gut microbiota means the bacteria that naturally live in the human gut. This dense microbiome has multiple functions, including the absorption of nutrients and preventing disease. ‘Good bacteria’ help to promote health and wellbeing and reduce inflammation. There are also the unfriendly or ‘bad bacteria’, that may actually promote inflammation within the bowel. In fact, the true significance of gut bacteria upon mental and physical health is still not fully understood. Dysbiosis means an imbalance within these bacteria, which can be an aggravating factor in autoimmune diseases, including SSc. This can cause digestive discomfort and even make symptoms worse. A study from the USA in 2016 found patients with scleroderma to have higher levels of the unfriendly bacteria that might promote inflammation, and lower levels of the good bacteria that could protect against this.1 Bacteria are largely sustained by the food we eat and are maintained by prebiotic fibres. Diet can therefore affect the microbiota, which may then impact upon health and symptoms. To help maintain the good bacteria, think about what you eat. If you

can tolerate them, a wide range of plant-based foods including fruits, vegetables and wholegrains will help to boost your intake of the prebiotic fibres that nourish healthy gut bacteria.

in particular is triggering your symptoms. Many FODMAP-rich foods are actually very good for us, so this is not about cutting them all out forever. FODMAPS are found in a wide range of foods, and unlike overly-processed products, Try to avoid foods that are many contain the overly processed, such prebiotic fibres that as processed meats feed the healthy and ready meals. gut bacteria These contain and support Try to avoid higher levels a healthy foods that are overly of artificial balance. Many additives, processed, such individuals which are as processed meats with systemic thought to and ready meals. sclerosis suppress can tolerate the good FODMAP-rich bacteria and even foods if they are encourage their prepared in certain unfriendly counterparts, ways, such as cooking which in turn may lead to vegetables in a soup instead inflammation and feeling of eating raw. Therefore, if you worse. Another American can tolerate these foods, you study from 2018 found that should not avoid them. certain additives had a negative effect on microbiota With the guidance of balance, leading to issues a nutritionist or other including inflammation in study experienced healthcare participants.2 provider, try to eliminate the high-FODMAP foods for The Low - FODMAP Diet six weeks only. Plan ahead and think about suitable FODMAP: Fermentable alternatives, as this will make Oligo-, Di-, Monothings easier. The second saccharides And Polyols phase is to then reintroduce A low-FODMAP diet is each item slowly, and onesometimes recommended at-a time. Gradually increase by dietitians for people with the serving over several days irritable bowel syndrome (IBS). to see how well you tolerate something. If it appears to FODMAPs are a group of trigger a reaction, you may short-chain carbohydrates that have to limit it within your are not easily broken down diet. This should enable you to within the gut. According to identify your level of tolerance the FODMAP theory, these can to each food and determine increase the volume of liquid if there is anything you need and gas within the intestines, to limit to avoid triggering causing some people to symptoms. Not everyone is experience pain, bloating or sensitive to FODMAPs, so diarrhoea from some highnot everyone will notice an FODMAP foods; so avoiding or improvement when these are restricting these may help. eliminated. A low-FODMAP diet aims to discover which foods you can tolerate, and whether anything

Self Care

The low-FODMAP diet is really designed as a short-term exclusion diet, to help identify foods that may be triggering symptoms. Ultimately, it is about including as many of these foods as you can, and identifying any that you cannot tolerate, or could have in smaller amounts.

Only avoid or restrict high-FODMAP foods if you feel that you do not tolerate them or that they may be making things worse.

Always talk to your doctor or dietitian if you feel you may be sensitive to FODMAP-rich foods before making any changes to your diet.

As a guide, high-FODMAP foods include:

Lower-FODMAP alternatives include:

Fruits Apples Cherries Nectarines Mango Peaches Pears Watermelon

Fruits Cantaloupe Strawberries Orange Banana Avocado

Milk and alternatives Lactose-free dairy products Almond milk Unpasteurised cheeses

Grains Brown rice Gluten-free products Oats Quinoa

Vegetables Bamboo shoots Bell peppers Broccoli Carrots Cabbage Sweet potato

Grains Barley Wheat Rye Semolina Dairy and alternatives Lactose Soya milk

Legumes Baked beans Lentils Kidney beans Sweeteners Agave Honey Fructose Sorbitol Xylitol Vegetables Garlic Leeks Onion Celery Peas

Sweeteners Sugar Maple syrup

This information is intended to serve as a general reference only. If you would like to explore any of these aspects further as they relate to your health, please talk to your doctor or visit nhs.uk.

There is however some evidence to suggest that a change in diet may help a leaky gut, although these generally focus on healthy eating and reducing aspects such as alcohol, added sugar and processed foods.

References: 1. Volkmann ER, Chang YL, Barroso N, Furst DE, Clements PJ, Gorn AH, Roth BE, Conklin JL, Getzug T, Borneman J, McGovern DP, Tong M, Jacobs JP, Braun J. Association of Systemic Sclerosis With a Unique Colonic Microbial Consortium. Arthritis Rheumatol. 2016 Jun;68(6):1483-92. doi: 10.1002/art.39572. PMID: 26749064; PMCID: PMC5561666 2. Zinöcker MK, Lindseth IA. The Western Diet-Microbiome-Host Interaction and Its Role in Metabolic Disease. Nutrients. 2018;10(3):365. Published 2018 Mar 17. doi:10.3390/nu10030365

Weight loss occurs when you use more energy than you consume and with scleroderma, you may find it harder to maintain weight. It is important to address the cause of any weight loss, in order to identify the best treatment plan. For example, if you have lung involvement or pulmonary hypertension, breathing difficulties could be a factor as you are having to use more energy. With GI tract involvement, malabsorption may occur if the body cannot absorb all the nutrients and calories from food. Appetite may also be affected, and if you have difficulty in swallowing, this may impact upon how much you can eat. It may help to eat little and often, with smaller meals consisting of foods that you find easy-to-digest, along with healthy snacks in-between. You can also fortify meals to optimise your intake of calories and protein without necessarily making them bigger or harder to digest. Try increasing your intake of healthy, plant-based fats, such as olive oil, flaxseed oil, avocado, dark green vegetables and fish. If necessary, your doctor may prescribe a nutritional supplement to help you maintain weight.

Leaky gut syndrome Leaky gut syndrome means increased intestinal permeability; and there seems to be a growing interest surrounding this concept. The gut lining acts as a barrier that prevents harmful agents from entering the bloodstream. Leaky gut occurs when this barrier is compromised, allowing certain toxins to escape. This may cause inflammation, along with imbalances in gut bacteria, with some studies associating a leaky gut with certain autoimmune conditions. It may be that the immune system reacts to toxins entering the bloodstream leading to inflammation, but this remains largely unproven.

Maintaining weight

If you would like any more information about gastrointestinal involvement in scleroderma, please visit sruk.co.uk. As ever, always talk to your doctor before making any changes to your diet. We would like to thank Dr Elizabeth Volkmann, MD, MS. (Assistant Professor of Medicine, Director, UCLA Scleroderma Program, CoDoes Director, CTD-ILD Program, Division what you eat of Rheumatology, Department of affect how you feel? Medicine, University of California, Could you share your Los Angeles); for her support and story with us? We would guidance in producing this article. love to hear about what has made a difference within our community. Please email info@sruk.co.uk

Personal Stories

DOES DIET MAKE A DIFFERENCE? YOUR STORIES We reached out across our community to ask about any dietary changes that you may have tried, and whether these have made a difference. We would like to thank everyone who shared their stories with us. Just as scleroderma affects people in different ways, everyone who talked to us seemed to have a different experience of the dietary changes that may or may not have helped them; and no two stories were the same.

Raynaud’s symptoms made him cry with pain. Patches of morphoea were appearing all over his body, scarring him for life. He was prescribed routine medications for autoimmune disease, such as steroids and methotrexate. Hydroxychloroquine was added in after a few months due to persistent joint pains. He took nifedipine for the Raynaud’s. His symptoms were much improved, but I always felt we were missing something.

Liz and Oscar’s Story Oscar was diagnosed with mixed connective tissue disease in October 2014. He was 10 years old. As his parents, we were absolutely devastated. As medical doctors ourselves, we were fully aware of the implications. Oscar had his whole life ahead of him. Now his hands were swollen, stiff and painful. His joints were sore. He was pale, tired and weak. Severe 16

Oscar had always suffered with intermittent gastrointestinal symptoms - abdominal pain, belching, bloating and reflux, dating back to way before his diagnosis. He was investigated thoroughly to try to identify a cause. No cause was found. It wasn’t until March 2016 that we made the connection with diet. After a family meal consisting of a pie as the main course and profiteroles for

dessert, Oscar looked grey and was doubled over in pain. It suddenly dawned on us that food was affecting him, and we started to do our own research. We discovered Autoimmune Protocol Diets and how some people with autoimmune disease may have what is called a ‘leaky gut’. We started by eliminating gluten. His abdominal symptoms improved almost immediately. We noticed that dairy products often resulted in nausea, headaches and belching, so we eliminated all dairy from his diet. His abdominal symptoms completely resolved, but his autoimmune symptoms were also improving. His health was the best it had been for ages. With the help and advice of his rheumatology team, we started to gradually reduce his medication: a scary prospect as I worried that he would become gravely ill again. When some mild joint pains recurred, we decided to dive into the autoimmune diet properly in order to see the full benefits.

In addition to eliminating gluten and dairy, we cut out soya, nuts, seeds, eggs, all grains, legumes and nightshade vegetables. We cut out all processed foods and cooked everything from scratch using organic ingredients whenever possible. We included a wide range of fruits and vegetables every day and plenty of good quality meat and fish. His health went from strength to strength. He is now 17 years old. He is happy, strong, fit and healthy. He is in full remission and has been off all medication for almost four years. He has had a few mild flare-ups over the years, but these have always coincided with a change in his diet. He has never needed to go back on medication. He remains on a very strict diet, but we have managed to reintroduce some foods which makes life much easier. He seems to tolerate eggs, cocoa powder, almonds, white rice in moderation and occasional porridge oats. We have learned that food reintroductions must be done very carefully. I now have a keen interest in nutrition and lifestyle to manage chronic disease. I have completed several courses in Functional Medicine, learning to address the root causes of illness, rather than just treating symptoms. Oscar has been amazing throughout all of this, maintaining a positive outlook on life and a wicked sense of humour. He is and always will be an inspiration to us. Dr Liz Clarke

Jane’s Story Whilst I am lucky to be well, digestive problems have been a significant issue over the years, and I have had to make significant changes to my diet. For example, I became a vegetarian four years ago, and this has made an amazing difference. I also have to avoid yeast and sugar, as these also aggravate my symptoms. I have also taken probiotics to maintain balance, and this has helped as well. Jane, diagnosed in 2014

Real Changes I have scleroderma and my digestion was so bad I would go for days without my bowels moving and I became constipated. I started to monitor my diet and realised that meat and fish were triggering these symptoms and giving me excruciating pain, severe fatigue and painful digestion after days of no bowel movement. I also cut down on fizzy drinks, even though my intake was very low. So now I have stopped eating fish and meat and it has made a big difference. I do eat a lot of chicken and it’s easy on my digestion as well. I have increased my intake of dry fruits and nuts and realised it gives me energy, whereas before I would not have an appetite for them and feel itchy, but they help a lot. Anonymous

My Diet with Scleroderma, Seven Years On At first, the main limiting factor was my gut, and I soon realised that a low-fibre diet was necessary, and that the classic ‘lots of colourful fresh fruits and vegetables’ was impossible. Dried fruit, such as raisins, also impossible, so no chance of mince pies or Christmas pudding! Extreme caution with nuts. Fruit smoothies do go down OK, as do yogurt, cheese, eggs (not boiled), chicken, salmon, olive oil, butter, white bread and of course plain or chocolate cake. The FODMAP diet is informative; and is basically an exclusion diet to find out what is not tolerated. I am not bothered by gluten, milk or sugar, but tomatoes, garlic and onions are sadly out. Sugar substitutes upset my gut. The fatigue, hand-stiffness and difficulties with standing all make preparation and cooking harder, although home-made food is better as you know what is in it.

Personal Stories

As time went on and my heart has been affected, I have stopped alcohol, coffee and tea as they can give me palpitations. Unfortunately, too much chocolate can also do that. Anonymous

Brenda’s Story I do have a good, healthy diet. I need to eat regularly otherwise I do find I feel cold and my hands often go blue. I have never tried anything different to help my Raynaud’s or Scleroderma. I do have IBS, so have tried eliminating some foods, but this never helped. Brenda

Shirley’s story I am pretty certain I have had Raynaud’s since childhood and was diagnosed with limited scleroderma in about 1991; a lot of my problem is pain and stiffness in my muscles and to some extent my joints. I have some swallowing and gut motility symptoms

Support Groups

and I find it difficult to swallow chicken and turkey breast, standard sliced bread, large, flaked fish and chips, which all tend to stick - no fish and chips from the chip shop! I can eat dark meat of chicken and turkey and most other fish. I need to have plenty of gravy or sauces, or some sort of drink with my main meals.

again this is probably not due to scleroderma.

I also have a problem with cold water, which tends to sit in my gullet so I always try to have warm or hot drinks.

We eat our main meal at lunchtime and have a light tea about 6pm, as otherwise I suffer badly with reflux.

We now make our own bread and I use Wessex Mill French flour which I find I can swallow and digest more easily, but I don’t eat more than a couple of small slices a day. I find that wholemeal flour upsets my digestion, but whether this is due to scleroderma I don’t know.

Shirley

As a family we have some issues with milk and I have plain soya yoghurts, but have no problem with cheese or butter so it may be the whey that is the problem, but

I like a glass of wine from timeto-time, but it has to be red as white goes straight to my joints. I try to be careful of having too much sugar, but enjoy a large orange for my breakfast most mornings, which I find satisfying and digestible.

For more information on diet and nutrition, please call our free Helpline or visit sruk.co.uk.

Please note that these are personal stories and all opinions and experiences expressed are unique to the individuals involved; they do not necessarily reflect the views of Scleroderma and Raynaud’s UK. As ever, always talk to your doctor or nurse specialist before making changes to your diet; or ask to be referred to a dietitian for specialist advice.

THE SRUK SUPPORT GROUP MIDLANDS Avtar’s Story “Our Support Group works so well; when I first went to the doctor there was no one to turn to for support and to help with what was going on. They are a great bunch of people and I feel very lucky.” Avtar Gill Avtar Gill, 48, lives with his partner in Birmingham, on the borders of Solihull. He has secondary Raynaud’s and Scleroderma. Avtar started the SRUK Support Group Midlands in 2018, when he realised that there was a gap in local support services within the area.

Before I turned 40, I was one of those people who never saw the doctor and was not on any medication. Today, things look very different. I was diagnosed with secondary Raynaud’s in 2016, after the symptoms started without warning when I had a sudden, severe Raynaud’s attack. I saw my GP, who made a referral to Solihull Hospital and I was diagnosed with systemic sclerosis. Today, I am prescribed a cocktail of different medications to help manage this condition. My diagnosis led to my taking redundancy under capability, which effectively ended my career within the training team of the AA. After a brief spell in early retirement, I now work for Tesco on a part-time basis.

Support Groups

It was during the process of my diagnosis that I first reached out online to try to find others who may be in a similar situation, as I found it very difficult to make connections locally. I eventually suggested that we all try to meet in person, and this was the start of the Support Group, when myself, my partner and three others met in a pub in Birmingham for the very first time.

Helpline

struggles can be very helpful, and the Support Group is ideal for this. For example, I was having trouble swallowing and ended up having an endoscopy. I reached out to the group to see if anyone else had the same experience, and this was very useful. Before the pandemic, we used to meet in-person every quarter on a Sunday on a pre-agreed date. During the first lockdown, we found that Zoom was the best platform on which to stay connected, and this took place on a weekly basis over the summer, although we now do it on the first Sunday of every month.

It was enlightening to talk to other people who were also living with Scleroderma and Raynaud’s, and since everyone felt the same way, we quickly agreed that our meetings should continue, with John Lewis chosen as an accessible, central location. Partners are still Everyone was keen to keep in touch very welcome, as these conditions throughout this time, and meetings are can cause a great deal of stress generally not structured; but designed and anxiety, so all-round to enable people just to turn up and For more support remains incredibly talk about anything they want to. information on our important. Many people have now made real, Support Groups or We started a WhatsApp lasting friendships through our to get involved, group and a Facebook Support Group. group, and also reached please email When life eventually returns to out via the HealthUnlocked info@sruk.co.uk and normal, we will probably combine forum. Our little group our online catch-ups with facewe will be very happy of five has quickly grown, to-face meetings, so that we can to help you. and we now have around include anyone who cannot get 30 members. We promote there in person but would still like to our meetings on social media be a part of what we do. Setting up this including the Facebook group, which amazing group has definitely been worth it. is a closed group and a safe space to share any concerns or seek advice. When something happens, having somewhere to share our

HELPLINE UPDATE Our free Helpline offers confidential support to anyone affected by Scleroderma and/ or Raynaud’s, whatever their situation. Our Helpline team are all volunteers with some experience of Raynaud’s and/or Scleroderma. They are not medically qualified and cannot give medical advice or opinions; but will actively listen and try to help with your enquiry, offering an individual, personalised response. We understand that everyone’s experiences are varied, complex and unique, and our amazing volunteers make a huge difference. We are committed to providing the best quality service to everyone who calls our Helpline; and our volunteers update their skills regularly. We are an accredited member of the Helplines Partnership and conform to their standards of excellence.

Susie, one of our volunteers says: “Types of calls I have had have often been people seeking to find out if their symptoms are part of either Raynaud’s or Scleroderma – they may ask this if it’s a new symptom, and they haven’t been able to work out by reading about the condition if it’s related or not. Sometimes they want to know if it could be related to either condition before approaching their doctor about it. Often people just want ideas of what they can do to help with managing a part of their daily life or to ask if anyone else has experienced the problem they have, and if so, what did they do about it.”

Call Free: 0800 311 2756

Our volunteers provide a vital service in supporting our community.

Lizzie told us “It is a privilege to be a volunteer on the SRUK Helpline, and I feel ready and willing to hear calls about any concerns. Sometimes the caller has been newly diagnosed or may have had Scleroderma or Raynaud’s for some time but is worried about a change in symptoms. Another caller may have problems at work and just needs signposting to a useful organisation. Helpline volunteers have several lists of useful names and numbers to suggest.”

Ask the Nurse – Welcome Alison! We have recently launched our new ‘Ask the Nurse’ service with rheumatology nurse specialist Alison Bayliss, to provide specialised information, advice, and support. If you have a medical query, please call 0800 311 2756 and we can arrange for Alison to answer your enquiry. “I want to help patients and their families by offering support, information, education, signposting and advice; to help them to manage their often-difficult symptoms on a day-to-day basis. SRUK is the only UK charity dedicated to patients with these conditions, and I absolutely want to be a small part of their amazing work. By volunteering my time, experience and expertise, I hope to help make a difference and at the same time be part of something special”. Alison Bayliss

We always welcome your feedback in helping us to develop and improve our Helpline service, ensuring that it is, and remains, as effective as possible. If you have called us before, please visit sruk.co.uk/find-support/helpline/helpline-feedback/ with any comments or suggestions.

Picture taken pre COVID

COVID-19

Raynaud’s Awareness Month 2021

COVID-19 INFORMATION AND SUPPORT Our dedicated COVID-19 programme offers all the information, advice and support that you need during these unprecedented times. The aim is to ensure that our community is well-informed throughout this pandemic, with information provided in clear, accessible formats; and regularly updated as the situation evolves.

The aim of our Facebook Live Q&As was to offer support and information; with an accessible platform that is easy to use. We have now produced 10 interactive Q&As on a range of topics including COVID-19, skin health, dental care, foot care and medicines management; all delivered by specialist healthcare professionals.

Website

To Dr Cate Orteu, Ref.

sruk.co.uk/find-support/coronavirus/

SRUK Q&A online: I asked you a question about this

Our COVID-19 web pages offer the latest information and advice, along with details of various support services. They are designed to help answer any questions or concerns surrounding how you and your family are affected by coronavirus.

rash, you advised it could

be fungal due to location being limited to one part

of my body... I contacted

my doctor who prescribed

fungal medication due to length of time I’d had rash...

to my relief it was cleared, no more pain, itchy, seepy

“I also wanted to say the COVID info on the website has been excellent, especially the risk guidelines rheumatologists have been using. There was no info on the NHS site, so the SRUK website was my source of information”. Anonymous

horrible looking lumps on

my skin. THANK YOU from the bottom of my heart x

Facebook Live Q&As

Webinars

YouTube.com/c/WeAreSRUK/videos

Our most-watched Q&A attracted over 2,500 viewers!

Since the onset of this pandemic, we have been more focused than ever on digital engagement.

These sessions had a positive impact on our community’s ability to manage their health (77% of respondents); and to better understand their condition (81%).

Through our webinar series we have engaged with up to 80 people at a time, on a range of topics including navigating the COVID-19 landscape, getting ready for winter and managing digital ulcers.

RAYNAUD’S AWARENESS MONTH #KNOWRAYNAUDS Every February we run our Raynaud’s Awareness Month. The key messages are: know your symptoms, know how you can manage them and know what the risks are. We encourage people to take our online test to find out whether they could have Primary or Secondary Raynaud’s. We then offer information about what that could mean for them and how SRUK can help. This year will be slightly different, but we can still raise awareness together. If you would like to get involved with Raynaud’s Awareness Month 2021, here are some ideas:

Host a virtual Catch up with a Coffee You could host some games, or just have a chat. You can do this with your friends or with your colleagues. Talking about Raynaud’s may even help them - perhaps they’ve always had cold hands and feet and didn’t know why.

Run a #KnowRaynauds quiz We can help you with this, so please contact us for more information.

Share your story or ours on social media Fnd us on Facebook, Instagram and Twitter and share our posts or tell your own story to keep the conversation going.

Tell us how you #KnowRaynauds Real stories are what people engage with. Tell us about your Raynaud’s journey – what does Raynaud’s mean for you? how does it affect your life? What would you recommend to someone who is newly diagnosed or not yet diagnosed?

Take the test

SRUK Virtual Conference 2021 This year, we will be hosting our first ever virtual conference for our community; we are not currently able to hold our annual conferences in person, but we know how much our members value them. So, whilst the platform will be different, our aim is still the same - to offer support and information to anyone affected by Scleroderma and Raynaud’s. This event will be free to attend for our members; with a small fee payable for non-members.

Our one-day patient-focused conference will offer the opportunity to hear expert testimonies from a range of healthcare professionals. You will also have the chance to ask questions as well as share your experiences For more with others. information on the More details will be available very soon, via our E-News, website and social media!

Use the wonder that is social media to challenge your friends and family to take our online Raynaud’s test – then ask them to challenge five more people and pass it on. Visit sruk.co.uk/takethetest

range of services that we offer, please call us on 020 3893 5998 or email info@sruk.co.uk 23

Advertorial

Introduces

PAY YOUR ANNUAL MEMBERSHIP BY DIRECT DEBIT Pay Your Annual Membership by Direct Debit

Elizabeth McGuinness has kindly made a donation on behalf of Kiwi Country clothing to showcase her products as she believes they will be of interest and help our community. Elizabeth McGuinness was diagnosed with scleroderma in 2017 and her company Kiwi Country Clothing, is not only a business but a personal passion. “I was born cold and have always suffered terribly in wintertime. As a university student (classical music and Irish language and literature), I really struggled with my hands and feet and could never warm up. So in 1998, when I found this range of possum merino clothing in New Zealand I never looked back. It has been my saviour for over two decades. We have had such positive feedback from a wide range of people, including Her Majesty, Queen Elizabeth who wears the possum gloves and insoles. I also work with health professionals. Annette O Driscoll, senior Occupational Therapist (OT) at Cork University Hospital bought some possum fingerless mittens, which she had been trialling on clients attending her clinic. She said that without exception, each of her clients had 100% success rate for significant pain reduction. We currently work with eight hospitals (mostly OT departments), across Ireland and our hand and footwear are now deemed the best available products, according to all of the medics, not just OTs, who referred their clients directly to us. We make bespoke hand, foot and joint wear using possum fibre which is one of only two fur fibres (the other one is polar bear fur) whose fibre is hollow, which allows it to breathe and provide thermal stability. It creates better blood flow and warmth, most notably in the extremities, which we all know are most vulnerable in cold weather. The possum fibre maintains a constant temperature several degrees warmer than the skin’s surface. It also helps prevent perspiration and condensation building up on the skin. The hollow fibres absorb surface moisture (sweat) and allow it to evaporate. It is also capable of allowing damaged skin to heal and renew in a matter of days. 24

The fur fibres create an effect called effleurage; a recognised medical effect of light stroking of the skin. It stimulates the nerve receptors in the skin to such a degree that it competes with the pressure signals (pain) from deeper, stressed tissues. This effleurage effect overlays pleasurable sensations on the same neural pathway, effectively modifying the sensations and helping to relieve pain and discomfort. It is also proven (anecdotally) very beneficial for those post-radium or chemotherapy treatment who suffer from neuropathy in their feet and /or hands and has similar success for damaged skin. Superfine merino has been well-regarded for decades as ideal as super-warm base layers, for mountaineering or working in sub-zero temperatures. The combination of the possum fibres and superfine lambswool has created this wonderfully soft and super-warm product which is proving evermore effective for Raynaud’s and Scleroderma at affordable prices. To purchase our products visit: www.kiwicountryclothing.co.uk. For more information you can also visit www.possiehealth.co.uk.

You are now able to sign up to pay your membership fee by annual direct debit. This means it’s a lot easier for you as you won’t have to remember to renew each year. You can sign up by filling in this form and sending it back to us.

Personal details Mr/Mrs/Miss/Ms/Other

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Payment details I would like to pay £ Annually on 1st

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(month) starting from

Instruction to your Bank or Building Society to pay by Direct Debit Please fill in the whole form using a ball point pen and send it to: Bride House 18-20 Bride Lane London EC4Y 8EE Name(s) of account holder(s)

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5 3 1 2 0 8 Bank/Building Society Account Number

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Instruction to your Bank or Building Society

Name and full postal address of your bank or building society To: The Manager

Bank/Building Society

Please pay Scleroderma & Raynaud’s UK Direct Debits from the account detailed in this Instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this Instruction may remain with Scleroderma & Raynaud’s UK and, if so, details will be passed electronically to my bank/building society.

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Banks and Building Societies may not accept Direct Debit instructions for some types of account.

The Direct Debit Guarantee • This Guarantee is offered by all banks and building societies that accept instructions to pay Direct Debits • If there are any changes to the amount, date or frequency of your Direct Debit Scleroderma & Raynaud’s UK will notify you 10 working days in advance of your account being debited or as otherwise agreed. If you request Scleroderma & Raynaud’s UK to collect a payment, confirmation of the amount and date will be given to you at the time of the request. • If an error is made in the payment of your Direct Debit, by Scleroderma & Raynaud’s UK or your bank or building society you are entitled to a full and immediate refund of the amount paid from your bank or building society • If you receive a refund you are not entitled to, you must pay it back when Scleroderma & Raynaud’s UK asks you to • You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written confirmation may be required. Please also notify us. 25

Fundraising Heroes

FUNDRAISING HEROES

Could you be a fundraising hero? If you are looking for a new challenge in 2021, or would like more information about how you can get involved, please get in touch and we will support you every step of the way!

SHINING THE SPOTLIGHT ON SOME OF OUR FANTASTIC SUPPORTERS

He did it! In the Autumn edition we told you about Alan Hall’s challenge to run 20 half marathons in 12 months. We’re delighted to say that he has completed his challenge and exceeded his £2,020 target, raising £2,075 for SRUK in memory of his sister, Susan, who died from scleroderma nearly 20 years ago. Alan battled through injuries and two national lockdowns; and completed many of his runs ‘virtually’ in his local area following the cancellation of all planned events!

#TeamSRUK Needs You! Philip Beckett (middle) and some of the members of Team Lozzie Lockets

Paul Paterson raised over £1,800 by running the Aintree 10K in December, in memory of his stepmother Maureen (Mo). Mo sadly passed away after suffering from scleroderma, and Paul has raised an amazing amount in her memory. Paul will also be taking part in the Liverpool Half Marathon along with a group of family and friends this year. Race day will be extra special for Paul and the members of Team Go Mo, as it would also have been Mo’s birthday. Sarah and Ash asked for donations to SRUK in lieu of wedding gifts, for their wedding on 11 December. Sarah’s Mum passed away five years previously on 11 December 2015 after living

with systemtic sclerosis, and Sarah chose to raise money in memory of her Mum as a way of honouring her on her wedding day. They raised over £1,000! Philip Beckett has now raised £40,000 of his £50,000 target in memory of his daughter Lauren, who passed away after a short battle with scleroderma in 2018. Philip and his team of fundraisers saw most of their plans cancelled in 2020, but they didn’t let that stop them; they took part in their own socially distanced events, including organising their very own half marathon in Great Yarmouth.

If you can’t get to Everest, then Everest must come to you, and that’s exactly what Kim Dosanjh made happen! Kim took on the Virtual Everest Challenge, and climbed up her stairs an incredible 4467 times, which is the equivalent of 8848m the height of Everest! Kim has raised an amazing £1,500!

SRUK were the lucky recipients of Peter Duffy Ltd’s annual Christmas Charity Draw. We were nominated by Leeds Support Group Leader Chris O’Hora and received £250. Our Christmas Appeal has now raised over £12,000 so far, substantially more than the original £10,000 target. We’d like to say a huge thank you to everyone who shared their story, made a donation or shared our social media posts.

If you are interested in running for #TeamSRUK, or know someone who might be, we still have places available for different events in 2021/2022! You can find more information about our upcoming events on our website, or you can contact us directly - we’d love to hear from you! To contact the Fundraising Team, please email fundraising@sruk.co.uk or call 020 3893 5993.

Staff and customers at branches of The Works in South West England have been fundraising in memory of their colleague Anya Burns, who sadly died on 31 March 2020. Their instore fundraising events and collections have raised over £1,500. Chris O’Hora (left) receives the donation from Peter Duffy Ltd

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 Donate to us through as we do without our website at sruk.co.uk you and we are by clicking the donate always striving to button or by phoning our achieve more. If friendly team on you have an idea as 020 3893 5998 using to how SRUK can your debit/credit card. further support the 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 item, 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, then call our team on 020 3893 5998 or email info@sruk.co.uk. Your Stories We want to hear from you if you have a story that you would like to add to the magazine. 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 @WeAreSRUK

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