SRUK Autumn Magazine 2019 by Scleroderma & Raynaud's UK

SRUK NEWS Our Community Talks about their Quality of Life

Research into Quality of Life

How Nutrition and Exercise can Help

Patient Survey Results

We announce some of the key findings from our first major patient survey

Issue 15 Autumn Edition 2019

Event Calendar 2020 We were delighted to greet so many of you at our two Regional Conferences in June and October. Here’s what one of our delegates had to say about the recent event up in Glasgow: “The whole afternoon was very interesting and informative, each speaker was excellent. A lot was packed in using the time very well. A huge thank you to you all in SRUK for this truly successful, very helpful Conference.” ~Alison Watch this space for more announcements of upcoming conferences, info days, fundraising events and more in the year ahead. If you’d like to watch the presentations from Cambridge and Glasgow, head to our Facebook or YouTube channels by searching for WeAreSRUK.

MARCH

JULY

29th March – London Landmarks Half Marathon

3th July – 3 Peaks Challenge 4th July – Race to the Stones

APRIL

AUGUST

5th April – the ASICS Manchester Marathon

13th August – Wales End to End

26th April – London Marathon

MAY

SEPTEMBER

9th May – Great Wall Trek

12th September – Thames Bridges Trek

23th May – Edinburgh Marathon

13th September – Great North Run

OCTOBER 11th October – Royal Parks Half Marathon

For more information about any of these events go to: www.sruk.co.uk/events or contact the team on 020 3893 5998 1

Dear Supporters Well the weather is certainly getting colder after a glorious summer. Time to wrap up warm and don your hat and an extra pair of gloves. The SRUK shop was recently featured in The Times newspaper and we’ve been inundated with orders ever since. Do check out the shop if you need to replace your silver gloves and socks. And you may want to purchase your Christmas cards at the same time. Keeping warm is really important and so is receiving timely treatment and care. That’s why we’ve teamed up with the British Society of Rheumatology to work with them on an audit looking at the quality of healthcare you receive from your Rheumatology teams and whether it meets the BSR best practice guidelines. This is due to take place early next year and we’ll keep you updated on the results. Making sure you can get access to treatments is another focus for us and the work we do with the Rare Auto-Immune Rheumatic Disease Alliance (RAIRDA). In July 2019, the National Institute for Health & Care Excellence (NICE) confirmed it would launch a review of its methods for health technology evaluation. The review will consider changes to the ways in which NICE makes decisions on which medicines, technologies and diagnostics the NHS should make routinely available to patients. This will include the methodology that NICE uses to assess treatments for rare and ultrarare diseases and I have been invited to take part in these discussions. At SRUK we’re encouraged that more attention is being paid to rare diseases by industry, healthcare and the Government. The Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, recently announced there would be a ‘national conversation’ on rare disease to gather a range of views from the rare disease community. The views collected from patients, healthcare professionals and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases. Contact us if you’d like to find out more about contributing your views. Alongside our partners in RAIRDA we want to make sure that non-genetic rare conditions have a voice in this discussion. Raynaud’s Awareness Month is just around the corner and in February we’ll continue to raise awareness of the signs and symptoms with the public and professionals. Last year, alongside promoting our information in GP surgeries, there was a growing interest from local pharmacies to help us raise awareness. We’ll also be asking everyone to consider hosting a coffee morning, a great way to get together with friends and colleagues. We’ll keep you posted on how you can get involved in the January magazine. With best wishes Sue

Sue Farrington

Doc Spot

Quality of Life

QoL: A history of funding from SRUK

Patient Survey Results

Nutrition and Exercise

Skin Care

Annual Tests

Raynaud’s Awareness Month

Make-up Tips for Scleroderma

SRUK Shop

Fundraising Thank Yous

Carissa’s Story

Festive Fundraising

sue.farrington@sruk.co.uk @farrsue01

Doc Spot Your questions answered by our medical professional, Prof. Denton

Prof. Denton leads a large clinical programme in scleroderma at the Royal Free Hospital and co-ordinates multidisciplinary care for more than 1,400 patients. He was previously chair of the Heberden Scientific Committee of the British Society for Rheumatology and currently chairs the UK Scleroderma Study Group be possible for many types of surgery such as local or regional techniques. Your anaesthetist will discuss the risks and options before any planned surgery. I have developed red spots on my lips that are sore and when I eat my mouth feels like it is burning. Is this common in systemic sclerosis? Is there anything I can do about them? It is very common to develop red spots on the face, lips and hands in systemic sclerosis. They are called telangiectasia and are due to localised overgrowth of blood vessels in the skin. They are not usually painful. Painful red spots may be due to local inflammation or skin irritation and you should discuss with your doctor in case additional tests are needed. The mouth dryness occurring in systemic sclerosis or low vitamin or mineral levels could be relevant. Also, sometimes there is mouth or tongue inflammation due to infection (e.g. candida or yeast) related to reduced saliva production. This can be helped by mouthwash or other treatments that can be discussed with the healthcare team. I am 65 year old lady with systemic sclerosis who has been diagnosed with lung fibrosis and emphysema. Is it safe for me to have general anaesthetic for a surgery? Is there more risk for me? Although lung damage may be relevant for anaesthetic it is rarely so severe that anaesthetic is not possible, because there is generally a large reserve in lung function. If it is considered too dangerous then other forms of anaesthetic may

I was diagnosed about 8 years ago with Systemic Scleroderma. I also have Raynaud’s and Fibromyalgia. I’ve had these cyclic bouts of feeling like I have flu like symptoms and have gone to the ER about 5-6 times in the last two years. We thought at one point it was UTI infections but my doctors are beginning to think it’s probably the Scleroderma making me feel ill. I’m very lethargic, nauseated, clammy, and feel very weak. I’m unable to withstand being in the heat or cold for long periods of time and I’m having a difficult time concentrating during these bouts. They usually last for maybe 4-6 days and come on every couple of months. Is this normal for Scleroderma? It is quite common for systemic sclerosis patients to have episodes of tiredness or flu like symptoms. It probably reflects overactivity of the immune system and increased production of interferon, which is usually produced by the body fight viruses, but is also a feature of autoimmune disease. However, you may also have increased risk of urinary or other infections and so it was sensible to have this checked. If there are no ongoing infection then sometimes more general approaches can be helpful such as ensuring times for rest, pacing your level of activity or by specific medication for systemic sclerosis.

Could you clarify if running or walking has an effect on muscles? I have run for years, but have cut down as I felt as if I was struggling. The last time that I ran, I had stiffness in my legs even though it was a gentle pace and the pain lasted for days – it’s as if I have run a marathon. Whenever we exercise there is increased metabolism in the muscle and also mechanical stress. Accumulation of metabolites like lactate can occur and there is always the risk of minor injury. These account for the stiffness and pain that are common after any new or intense exercise. In general, this should not be harmful, and exercise is to be encouraged. Some rare forms of scleroderma like a condition called fasciitis can be triggered by very intensive exercise such as running a marathon, but this is extremely rare.

Would shockwave therapy cause problems with unwanted connective tissue growth in someone with scleroderma? I have plantar fasciitis plus tendonitis in toes, fingers and wrists and my osteopath has told me that several of her patients have seen a physio who offers radial shockwave therapy and have had good results. I am concerned though that the description for shockwave therapy is that ‘the energy promotes regeneration and reparative processes of the bones, tendons and other soft tissues.’ Since I am already growing too much connective tissue in some places, could this have the effect of stimulating growth of unwanted connective tissue as well as the wanted effect of healing the tendon and foot problems? There are many different forms of shockwave therapy. Low energy shockwave therapy has emerged as a possible treatment for patients with chronic tendon problems. The procedure uses either pressurized air or electromagnetic pulses to delivers shock waves to the body. High energy shockwave treatment has also been used to treat calcinosis in some cases to break up the calcified tissue, in the same way it has been used to treat kidney stones, but results are variable. Other newer techniques use magnetic or electrical waves to promote tissue growth. This may work by causing minor tissue injury to promote repair. These techniques have not yet been thoroughly tested in medical indications and so it is not possible to comment on their effectiveness or relation to other approaches such as medical therapy with drugs or physical approaches such as physiotherapy.

I have Raynaud’s as part of UCTD/MCTD and have tendonitis on the front left ankle and right hip followed by shin pain on both sides which has been difficult to settle. It seems that ice packs are contraindicated with Raynaud’s from my reading as are gel cooling pads. I was wondering how people with Raynaud’s manage tendonitis as cooling the tendon is thought to be such an important part of healing. Raynaud’s affects blood flow to the extremities and in exercise sometimes the symptoms are worsened due to blood being directed towards the muscles. The symptoms you describe sound like “shin splints”, (also called medial tibial stress syndrome) due to inflammation of the muscles, tendons, and bone tissue around your shin bone. I would avoid using ice or cooling pads for the reasons that you suggest but other approaches such as massage, stretching exercises and local anti-inflammatory gels or creams could certainly be used.

If you have a question you would like to ask Professor Denton, or have a comment on some of the answers given, please email info@sruk.co.uk

Or you can connect with us on Twitter, Instagram and Facebook. /WeAreSRUK

Quality of Life

In this autumn’s issue we are discussing Quality of Life for those living with scleroderma and Raynaud’s phenomenon, whether that’s through research linked to improving patients’ lives or personal experiences.

We asked a few of our community members to share their experiences. To give you a little insight into how the conditions can impact a person’s quality of life. We know that all your experiences are unique and there is no single defining factor for how they impact a person’s life. So please do keep sharing your stories with us to offer support to our community and help us raise awareness of scleroderma and Raynaud’s phenomenon.

Jane Potter, 49, has diffuse systemic scleroderma, which affects her lungs, and she also has Raynaud’s phenomenon. How do your conditions impact your quality of life? Plan plan plan is the key when you are going out, if it’s hot you have to slip on the right clothes, slop on the sunscreen and slap on a hat to keep your skin covered. In winter, I wear layers and more layers to keep warm. I also keep hand and feet warmers in my bag and car just in case to help when I have a bout of Raynaud’s phenomenon. What are some of the things you do to improve your quality of life? To manage I do regular exercise and stretches to try and keep my body from aching as much. I also use skin creams to help with my skin and eye drops for my dry eyes. I also have a fabulous partner who helps me daily, and family and friends who understand the condition and that sometimes I may need to cancel at the last minute. This is a condition that isn’t seen from the outside, we look fine, but the aches, pains and fatigue that we deal with daily are hard to explain to people. The most important thing is to stay positive!

Please share your stories and experiences with us so that we can all learn more about the ways these conditions impact your lives. Together we can raise awareness, learn more and support our community. Contact us by emailing info@sruk.co.uk or sending us your story at sruk.co.uk/raynauds-stories/

Sue Burgh, 60, lives with a host of different conditions, including scleroderma, lupus, Sjogren’s syndrome, rheumatoid arthritis, Raynaud’s phenomenon, bile salt malabsorbtion, cardiovascular autnomic dysfunction and pulmonary hypertension. How do your conditions impact your quality of life? I get out of breath easily, I am in pain most of the time, and find it hard to carry out day-to-day activities like opening cans (even with aids). Tablets are a nightmare in blister packs or plastic tubs. Life in general poses problems daily, however, having moved from a house on a hill to a bungalow on flat ground, life is much simpler for me in regards to getting around. There are too many things that are on the downside, but I choose to look at the positive things in my life, at least I wake up every morning! I have a wonderful supportive family and life is far too short to worry about being ill, life goes on regardless of illnesses. I try and make the most of what I can do instead of thinking about what I can’t do. This doesn’t always work and I do have “down days” I must admit, but I try to keep them to a minimum. What are some of the things you do to improve your quality of life? I have as many gadgets and aids as I can to help me. I rest when I am tired and I know my limits. If I spend fifteen minutes gardening I know I will pay for it the next day with being in pain and swollen joints, but I’ve had the enjoyment and sense of doing something so I feel the trade off is worth it. I can’t walk far, so some evenings my husband will drive me to take a short walk with our Cavalier King Charles Spaniel dog. He usually gets a good two- hour walk in the morning, so our walk gives me enjoyment and a sense of having achieved something, even if it is an occasional event. Apart from that one major thing we have done to improve my quality of life was to move from the said house in a main town to a bungalow near the sea.

Hannah Stevens, 25, lives with scleroderma, fibromyalgia, hypermobility syndrome and irritable bowel syndrome. How do your conditions impact your quality of life? My conditions have a huge impact on my day-to-day life. They impact my mobility and I struggle with severe fatigue on a daily basis. I’ve also seen the dexterity of my hands reduced, so that I struggle to handwrite for longer than a few minutes at a time. While my conditions are manageable, my whole life has become a plan. I have to approach life as a series of obstacles and carefully determine how much rest time I will need between each task I attempt. What are some of the things you do to improve your quality of life? To try and counteract the impact my conditions have on my quality of life, I plan my weeks carefully so that I always have at least a couple of rest days to account for flare-ups. I do physiotherapy on a daily basis and I have to be prepared to give myself extra sleep time, as my body needs more rest than the average person. I also try to eat fairly well, but I also allow myself treats! A treat keeps a person sane!

Quality of Life: A history of funding from SRUK Our mission is to improve the lives of everyone affected by Scleroderma and Raynaud’s and the research we fund is key to helping us achieve our goal. Ensuring the needs of our community are at the core of the charity’s activities and the research we fund has been central to our work in developing SRUK’s research strategy. We have defined 4 key themes to help inform our decisions when funding research: earlier diagnosis, causes, precision medicine and quality of life. Examples of such SRUK-funded research includes work done to identify major biomarkers to accelerate early diagnosis, the introduction of management tools that provide information on how rapidly the disease is progressing, and investigations into the efficacy of treatments. The community research panel thought it was really important to consider a person’s quality of life, taking into accounting their physical and mental health, relationships, goals and achievements and that SRUK should continue to invest in research into improving quality of life. Here, we highlight some examples of research projects that have been funded by SRUK in the past which focus on improvement of quality of life.

Assessing lung involvement in systemic sclerosis to enable effective treatment The implementation of a new technique successfully developed by Dame Carol Black, Professor Athol Wells and Professor Chris Denton has enabled clinicians to diagnose lung fibrosis, reducing the need for experts and thus allowing for a more rapid diagnosis. This is now the international standard for assessment and helps maintain quality of life by ensuring that some patients get the treatment they need whilst protecting others from severe side-effects caused by medication that will not help in their case. Dame Carol Black speaking at SRUK’s 2018 Conference

Lung fibrosis is found in over 50% of patients with scleroderma and is the leading cause of SSc-related mortality. Due to the pace at which it can progress, those with advanced lung fibrosis must be treated aggressively by dampening the immune response, however as there can be severe side-effects to this, it is critical that only those who really need it are administered with this medication.

Thanks to your support, we will invest over £300,000 in research in 2019/20. We are incredibly grateful to our community for your loyal and generous support. Together we can achieve better and more effective treatments, improved quality of life and strive for research breakthroughs. The previous assessment method was not precise enough, and so this team developed a technique that relies on cross-sectional x-rays of the body and reconstructs an internal view of the lungs, alongside lung function tests to display how well the lungs are performing.

Better and more effective treatments The availability of treatment and its suitability play a critical role in someone’s quality of life, either in terms of controlling or halting the progression of long-term conditions such as scleroderma and Raynaud’s. Scleroderma is a very complex condition, and this is further exaggerated by the fact that many questions surrounding the condition remain unanswered. Well-known treatments such as iloprost and other vasodilators were first investigated by the Raynaud’s and Scleroderma Association and Scleroderma Society funded researchers. Leading from this, effective non-invasive procedures such as laser and intense light pulsed treatments are now being assessed for their efficiency. These methods may aid with spider veins that are sometimes visible on the face, hands and forearms. The implementation of treatments such as these can have a profound impact on quality of life, chiefly by limiting and reducing the symptoms associated with Raynaud’s and scleroderma, and by targeting the physical manifestations of the conditions that may affect a person’s self-confidence.

Improving gastrointestinal management Loss of bowel control is an especially unpleasant symptom triggered by scleroderma and is one which is poorly understood. Health issues caused by the gut are among the most common manifestations, with approximately 8 in 10 people with scleroderma finding that the immune system is attacking their digestive system. A research team at University College London Hospital established a new, painless method of enabling patients to regain some bowel control, and thus improve their confidence in going about their day-to-day lives. The results of the team’s research suggested that faulty nerves could be the cause of SSc-associated bowel control loss, as a 12-week course of stimulating certain nerves in the leg with electric pulses helped to reduce the number of bowel control incidents reported by patients. This is now being considered by the NHS as a possible standard treatment. At SRUK, we are continuing to build on this history of funding key research that will accelerate benefits to people living with scleroderma and Raynaud’s. We recently announced a joint funding call for research projects focused on developing effective outcomes measures in patients with scleroderma and Raynaud’s. More effective ways to measure the outcome of treatments means that we can then have more effective treatments with fewer toxic side effects. We are pleased to be partnering with the World Scleroderma Foundation in running this grant call. We will be assessing applications throughout the winter of 2019, and will be announcing the successful applicants in March 2020 at the World Scleroderma Congress. We can only carry out activity like this with your amazing support. We are incredibly thankful to our SRUK community for their kind and generous donations. It’s only through working together that we can create a world where no one has to suffer from scleroderma or Raynaud’s.

Find out more about the research we’ve funded on our website: sruk.co.uk/research/research-news

Thank you for taking part in our survey Back in May 2019, we asked you to take part in a survey, both online and through our magazine, to help us understand how we can better serve our community of people living with scleroderma and Raynaud’s. We are really pleased to say that our community took up the opportunity in record numbers with over 1,000 of you completing the survey.

We are still analysing the results but here are some of the main findings so far. •

• To further understand our community’s demographics • Understand the role SRUK can play in a person’s support network e.g helping them feel less isolated • Understand how our community interact with health professionals so we can evaluate their role within your support network

Responses to Does SRUK help you feel less alone? Yes, Always

Yes, Sometimes

No, Never

18.83%

56.61% 24.56%

The method we used The survey questions that were decided upon encompassed various factors’. Each can be said to at least partially affect the way in which a person may deal with their diagnosis or condition; these fall under the categories of demographic data, medical journey, confidence to talk about their condition, loneliness and concerns, and SRUK. We distributed the survey via different channels: social media (Facebook and Twitter), the magazine, E-news and on HealthUnlocked and gave a deadline of about six weeks for completion.

Top three results We are still analysing the results, but we have identified three top findings to share with you:

Outcome, People have more confidence to talk about their condition Results, Over 90% of respondents described themselves as confident in discussing their condition

both some of the time and all of the time. Next Steps, Further improvement can be achieved by continuing to build upon the information that we provide as an organisation, such as through new information publications and attendance at more patient information days.

Outcome, People are more resilient and able to cope Results, over 80% of all respondents feel able to cope either always or sometimes, but over 70s are less likely to turn to their friends and family to help them.

Next Steps, Roles for SRUK within this outcome include the provision of materials detailing rights

and entitlement, and giving people access to resources that will better equip them in coping with the symptoms of both Raynaudâ&#x20AC;&#x2122;s and scleroderma.

Outcome, People do not feel alone Results, over 80% of all respondents feel less alone either always or some of the time due to the existence of SRUK.

Next Steps, Continued action can be taken through the organisation for more support groups in

the country and acting as a platform through which members are connected with eachother. This will help to widen the support network of many people, helping to ensure that they always have someone to talk to when they are worried about something or experiencing any challenges because of their condition.

Thank you! Over 1,000 of you took the time to complete the survey and thus provide us with an insight into a range of different aspects that are otherwise hard to assess, such as the likelihood of discussing concerns surrounding mental health and relationships with various individuals and with SRUK, or how valuable our different channels are from the perspective of our constituents. Whilst we are pleased with how the community view our provision of services, it is evident from our ongoing analysis that far more needs to be done to address unmet needs in order to improve quality of life and raise awareness of Raynaudâ&#x20AC;&#x2122;s and scleroderma . We would like to say a huge thank you to everyone who completed the survey, and we will be sharing further information as we continue the analysis.

How informed do you feel through the information SRUK provides

1.51%

Very informed Somewhat informed Uninformed

51.85%

46.64%

The value SRUKâ&#x20AC;&#x2122;s community find in the website compared to other engagement channels (with 5 being the most value).

Other engagement channels

Website

Route of engagement

Nutrition and Exercise Many things can impact the quality of a person’s life, especially if you are living with a long-term chronic condition like scleroderma or Raynaud’s phenomenon. While neither condition has a cure, there are many ways to help manage the conditions, including better nutrition and exercise.

not accommodate making nutritious meals three times a day. While living with these conditions can increase our likelihood of relying on those tasty ready meals and takeaways, there are plenty of options to help improve your nutrition.

Although the same things will not work for every single patient, there are a few options that can improve your quality of life without breaking the bank or overturning your whole life.

How do scleroderma and Raynaud’s phenomenon impact our mobility and nutrition? Scleroderma is a variable condition and it’s rare for patients to exhibit the exact same symptoms, however, there are overarching similarities. These include, tightness of skin, gastrointestinal problems, loss of dexterity in joints due to soft tissue damage, painful joints and reduced mobility. Living with a chronic illness makes nutrition even more important than it is for the average person. Our bodies need that extra kick of energy to fight the battle our body wrestles with on a daily basis. But a little nutritious food and light exercise can go a long way! Furthermore, the gut is affected in 90% of patients with systemic scleroderma, so an awareness of nutrition is even more important if you have this type. Raynaud’s phenomenon usually affects the hands and feet in patients. Many patients find that this reduces the dexterity in their hands and feet.

What are your options for better nutrition? Supplements can be your best friend and there are countless options out there to help you fill in gaps in your diet. Four of the most important things to get into your diet are Vitamin D, Omega 3s, Calcium and Iron. If you’re struggling to squeeze these into your diet, why not try some supplements to give you an additional boost? Instead of relying on the usual routine of three meals a day, try eating smaller meals every three to four hours. This routine is better for your metabolism and you’ll be able to avoid overeating, which causes strain on the gut. If you struggle to cut up fruit and vegetables because of mobility issues, then pre-cut ingredients are your new best friends! All supermarkets sell them and most of them can be popped straight in the oven. Fruits and vegetables can also reduce inflammation, regulate blood pressure and they are a great source of fibre. The same can be said for most meat products, which can usually be found pre-prepared in the cold aisles of your local supermarket.

It is important to consult your GP before you make any significant dietary or exercise changes in your life.

While you’re stocking up, check out your local supermarket’s ready meal selection. Although ready meals are not ideal for good nutrition, there are plenty of healthy options out there for you to use on days when cooking is just not an option.

How can nutrition improve quality of life for patients living with scleroderma and Raynaud’s phenomenon?

Some people with chronic illness also find following a specific diet can be helpful. These include sugar free, dairy free and alkaline – which reduces the amount of acid in your diet and can improve gut health. There are countless options out there, so take the time to find one that feels right for you and your hungry belly.

It may seem overly simplistic to discuss nutrition, but it is often shunted aside when our health does

Lastly, foods that are high in sugar and fats can have a negative impact on your health. Although we all love a sugary treat, there are many alternative options to explore. Try picking up a new healthy snack from your supermarket every week and you will find your new favourite treat before you know it.

How can exercise improve quality of life for patients living with scleroderma and Raynaud’s phenomenon?

What are your options for exercise? Firstly, if you already had a sporting hobby before your diagnosis, do not give up on it! Maintaining your fitness will make living with the condition that much easier. Research has proven that high-intensity interval training (HIIT) can improve vasculature function. A typical HIIT session involves 30 seconds to three minutes of working at 80-90% effort before a recovery period of the same length. A typical session might last twenty minutes. Physiotherapy can help manage symptoms. Take the time to do a full body scan and consider what areas of your body would benefit most from a little attention. Having a focus when you go into physiotherapy appointments will help you tailor the session for your needs. For those with tight muscles and joints, stretching helps to keep the body limber. Try slowly introducing a couple of full body stretches first thing in the morning and last thing at night. It will keep your body feeling looser and more relaxed when you start your day and when you finish it.

Trying to keep up with regular exercise while living with a chronic illness can feel impossible, but many studies have proven that regular exercise can improve the lives of chronically ill people. The impact of regular hospital visits or admissions and treatments, can make exercise feel impossible, especially during a flare up. However, even during the worst flare-ups, there will be a window for some form of exercise, whether that’s walking up and down the stairs, stretching or a brisk walk around the garden. Even the smallest amount of exercise can improve your quality of life when living with Scleroderma and Raynaud’s phenomenon. It is important to consult your GP before embarking on any new exercise routine.

Many people living with scleroderma, will be accustomed to chronic pain. if you are one of these patients, try introducing a little regular cardio into your week. Cardio is considered the best form of exercise for pain relief, as it releases those good endorphins into your body, and it can be easily regulated so that you do not over do it. Most importantly, when it comes to exercising with a chronic illness, remember not to overdo it when you have a good day. You should only do what you can, not what you want to do. Overdoing it one day will only leave you in more pain the next.

If you are just returning to exercise, build up your routine extremely slowly. Start at the very bottom with just five to ten minutes of cardio and only increase it once that feels easy. Exercise can be a wonderful thing for alleviating symptoms, but it is also very easy to overdo it and cause more damage. A great rule of thumb to follow is to try and stop before you start to feel tired.

Skin Care For patients with scleroderma and Raynaud’s, the winter season can be tricky to navigate with dry and sensitive skin. When the cold weather starts to ravage joints, skin and more, maintaining a high quality of life is important for keeping us grounded! To give you some guidance on how to manage your conditions during the colder months, our Press Officer Hannah Stevens, who has scleroderma, had a chat with Georgina Pantano, who lives with scleroderma and Raynaud’s phenomenon, about the ways they keep their skin moisturised and crack free during the coldest months of the year. Both Hannah and Georgina struggle with itchy and dry scalps throughout the year, which get worse the colder it gets, so they have shared their best tricks for managing the itchy nightmare! • Georgina swears by Aloe-Jojoba Shampoo and Conditioner. It’s a lightweight, pH balanced product that is sulfate free – perfect for those over us with ultra sensitive scalps. • For an extra kick, she uses Eucerin Dermo Capillaire as a scalp tonic. The product is nongreasy and helps treat an itchy scalp. • Georgina also sporadically uses a cheaper alternative called Re-Balancing Scalp Tonic by Trichology. • But Georgina’s ultimate trick is an overhaul of the water she uses to wash her hair. Instead of relying on the harsh water from her shower, Georgina boils tap water, freezes it and then sterilises it one more time by melting it on the boil. • After using a range of products, Hannah has settled on a routine of regular olive oil or coconut oil scalp baths to moisturise her scalp, followed by shampooing with Johnson’s baby shampoo, which is perfect for people with very sensitive skin.

When you have Scleroderma and/or Raynaud’s phenomenon, dry skin becomes part of your daily routine, so Georgina has shared her top tips for managing your delicate skin. • Keep away from any moisturisers that are packed with perfumes or scents. You never know what could set your skin off, so try to keep to natural products. • Georgina’s main moisturiser is E45’s Rich 24hr Cream. It keeps moisture in all day and isn’t too greasy either. • For a lighter option, try using E45’s Derma Protect Moisturising Lotion or some Aqueous cream. • After finding most exfoliators too harsh for her skin, Georgina found Body Shop’s Drops of Light Pure Resurfacing Liquid Peel, which is soft enough to protect her skin but also strong enough to shed extra dead skin.

• Most body washes are packed with perfumes and scents, so to avoid any extra irritation; Georgina uses Aloe Hand Soap as a full body wash. You can also use Aqueous Cream as a body wash. • To care for her hands, Georgina has a regular paraffin wax bath. Firstly, she slathers her hands in E45 moisturiser while the paraffin wax bath heats up, then she dips her hands into the warm wax. Once her hands are covered in the wax, she puts on some plastic gloves, followed by oven mitts to keep it packed in, and then she keeps it on for between ten and twenty minutes. This routine keeps the skin loose and soothes any sores.

Extra Tips: • As the winter months get colder and colder, it’s important to remember to carry a kit with you everywhere to manage that dry skin and those aching joints. Here are some of Hannah’s essentials: • Hand cream: in the winter months I’ll use this up to 20 times a day to keep my hands supple. I deposit E45 cream into a smaller container, which can be bought at your local Boots or Primark for a couple of pounds. • Hand warmers: the colder your hands get, the more likely they are to crack and get sore. Keep them warm 24/7 with a packet of reusable hand warmers! • Gloves: always keep a pair of these handy and try popping hand warmers inside to keep your fingers extra toasty. • Deep Heat Pads: if your joints get sorer as the weather gets colder, then try investing in a batch of deep heat pads. I stick these to my hips whenever I go out in the colder to reduce any pain. • Hand Grip Strengtheners: as my hands become more painful in the winter, I carry one of these around with me to exercise my hands whenever they get stiff.

Annual Tests for Systemic Scleroderma The manner in which scleroderma can spread means that regular monitoring of the whole body is necessary to assess how the condition is progressing. The heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system can all be affected, resulting in a variety of symptoms, some of which can be life threatening or cause physical disability. Every case is different and so the symptoms will vary from one person to the next; generally, this will include hardening of the skin, joint pain, and swelling of the hands and feet. Symptoms of Raynaud’s phenomenon are highly likely to be experienced, such as numbness of the fingers and toes in response to cold or stress. Symptoms of scleroderma can be attributed to an overactive immune system and an increase in the level of collagen (scar tissue) production. Collagen is the main component of connective tissue and is necessary for wound healing and gives skin its strength, waterproofing and elasticity. Excessive collagen production leads to fibrosis (tissue scarring) in the skin and internal organs. Alongside certain lifestyle changes, annual tests can help to maintain quality of life, as this will inform physicians of the extent of internal organ involvement and whether further management interventions are required.

What can be affected? Pulmonary function Pulmonary (lung) fibrosis (also known as interstitial lung disease) is found in over 50% of patients with scleroderma, and pulmonary arterial hypertension (PAH) affects approximately 10% of those living with scleroderma. Pulmonary fibrosis occurs when the tiny air sacs in the lungs, the alveoli, are affected by inflammation excessive scar tissue. As the alveoli are responsible for oxygen transfer from the air to blood, and the removal of carbon dioxide (a waste product) from the blood, breathlessness is the most common symptom. Initially, this may only be noticeable when exercising, climbing stairs or walking upstairs. PAH occurs when the inflammation and fibrosis is localized to the lungs’ blood vessels. This means that the

pressure in these vessels is too high, ultimately meaning that less blood is transported to the lungs and so less oxygen is carried into the blood stream. The right side of the heart therefore has to work harder to compensate for this. Symptoms may include shortness of breath, fatigue and chest pain. Pulmonary function tests assess how well the lungs are working and provide information surrounding whether the disease is stable or worsening. Tests include: a spirometry test, to measure lung volume; a clearance test, to assess how well the lungs take in oxygen; measurement of gas transfer factor, to see how well oxygen and carbon dioxide are transferred.

Cardiac function There is increased risk of heart disease in all people as they age, but in scleroderma this risk is heightened as the heart is one of the organs directly affected by the disease. It’s important to check heart function annually, as cardiac changes can develop without noticeable symptoms and can go undiagnosed for many years. There are a variety of ways this can manifest, such as hypertensive heart disease and rhythm problems, but the most common is systemic sclerosis heart disease whereby the condition causes increased strain on the right side of heart due to PAH. Cardiac fibrosis can occur in around one in five people with scleroderma; often this is only noticed on scans. This can, rarely, become very severe and can make the heart unable to relax and can cause heart failure. Risk assessments, such as cholesterol assessment and smoking history, and screenings to identify heart disease are now very common in this regard. Electrocardiograms can detect rhythm problems and scarred cardiac muscle, and echocardiograms provide information about how the heart is working and its structure, as well as assessing the likelihood of PAH development.

Kidney function Very often, individuals will not notice kidney damage caused by scleroderma, as the symptoms are not obvious. It is common for kidney function to be partially limited due to scleroderma, but this does not tend to be a major medical issue as they will still operate at 50-70% of their optimal

capacity. This means they are still able to clean the blood of waste and water, control the production of red blood cells, and control blood pressure. For 5-10% of the community however, the reduced function will lead to severe, uncontrolled high blood pressure from narrowed blood vessels within the kidney, starving the kidneys of blood and oxygen. This triggers events which raise the body’s blood pressure to increase blood supply to the kidneys. If left untreated, there can be lasting damage to the kidneys, heart and lungs. This is referred to as scleroderma renal crisis, and symptoms include severe headaches, breathlessness, nausea and in some cases seizures. Blood tests can be used to inform the physician of how well the kidneys are performing. For example, a waste product, creatinine, is usually removed from the body by the kidneys, and so a high level of this in the blood may suggest that the kidneys are not working properly. Blood pressure tests are another way of detecting a scleroderma renal crisis; these are important for all people living with scleroderma, but especially so for those with antibodies to RNA polymerase III or Scl-70, or those being treated with corticosteroid drugs.

Mental health and quality of life The impact of scleroderma on mental health is often overlooked. This may be in terms of confidence as well as the wider repercussions of the condition on day to day activities. The pain caused by thickening of skin and stiff joints may further influence the level of independence and ability to work and take part in hobbies. Studies have also shown that sexual problems are prevalent in people who suffer from chronic diseases such as scleroderma. It is incredibly important that the psychological effects of the condition are considered when evaluating the overall health of a person. Mental health discussions with health professionals should be routine and there are a range of options available, such as counselling and CBT, as well as antidepressants. Aspects of scleroderma such as pain are harder to measure objectively, so a clinician may assess this by questionnaire, whereby pain is ranked on a scale of 1 to 10. This may be used alongside more quantitative assessments such as mobility tests. It is important to remember that it is important to talk to someone you feel comfortable with if you are struggling to cope. Although not discussed widely, scleroderma can affect sexual function in both men and women. In men living with scleroderma, the biggest concern is erectile dysfunction, and for women, issues such as pain, stiffness and vaginal dryness can all present problems. Furthermore, changes to the body may be of detriment to confidence, leading to lack of sexual desire. There are physical treatments available for erectile dysfunction, such as sildenafil and a medicated urethral system for erection. Vaginal lubricants and smooth plastic dilators for women can be purchased without prescription. Referral to psychosexual counselling is also possible. It is essential to speak to your doctor if you have concerns or questions even if they do not ask directly and involving your partner when seeking help may also be beneficial in reducing anxieties and improving the support provided.

SRUK have produced a new leaflet ‘Information on Annual Tests for scleroderma’, which details what tests are available, how they are performed and what the results mean. If you would like one, please call the office on 02038935998 or email us at info@sruk.co.uk and we can post one out to you. Please feel free to take this to your rheumatologist or GP to ask if they would like to stock these too!

Get ready for Raynaud’s Awareness Month – February 2020 #KnowRaynauds Our 2019 Raynaud’s Awareness Month in February was a great success. We had over 25,000 people taking our online Raynaud’s test and 2,000 joined whilst our CEO Sue Farrington was interviewed on BBC Breakfast. That’s a big increase from 2018 where we had 6,000 taking the test. We want to do even better than that in 2020 and we will need your help to achieve this. We will soon be reaching out to you with more information about our February 2020 campaign and plans so do keep an eye out for more info. In the meantime if you have a story that you would like to tell us or any ideas of how you can get involved then please do contact Gemma Cornwell on 020 3893 5998 or email gemma.cornwell@sruk.co.uk

Cosy up with a Coffee Every year we also ask our supporters to organise a Cosy Up with a Coffee event to support Raynaud’s Awareness Month. Last year, your events raised £2,500 in February. What better excuse to get your friends, colleagues, neighbours, local school or community together to raise money, talk about Raynaud’s and of course enjoy a homemade cake or two! We have a pack which includes top tips, posters and more.

If you are interested in signing up or have any questions about hosting your Cosy up with a Coffee, contact Apurva by emailing fundraising@ sruk.co.uk or calling 020 3893 5993

Support & Useful Contacts Our SRUK Helpline is available to anyone who is affected by the conditions to receive support. The helpline operates 365 days a year from 9am-7pm. This service does get busy so if the call goes to voicemail please leave your name and number and you will receive a call back within 24 hours.

0800 311 2756

We currently have eleven volunteers who man the helpline on a rota basis; Amelia, Brigid, Jean, Katherine, Kim, Liz, Helena, Penny & Susie. Our volunteers update their skills regularly and having external accreditation, as a member of The Helpline Partnership, means that we conform to their standards of excellence. If you call the helpline, the volunteer that you talk to may have Scleroderma and/or Raynaudâ&#x20AC;&#x2122;s but as we know, everyone is different and the manifestations from person to person are varied and complex. Therefore, we refrain from swapping backgrounds and symptoms but listen positively to your issues and try to help you with your particular enquiry.

Specialist Nurses Rheumatology Telephone Advice Line

01225 428823

Leeds

Specialist Nurse Team

0113 392 4444

Liverpool

Jan Lamb & Jenny Fletcher

0151 529 3034

Manchester

Specialist Nurse Team

0161 206 0192

Newcastle Upon Tyne

Karen Walker

0191 223 1503

Portsmouth

Julie Ingall

0239 228 6935

Royal Brompton

Lucy Pigram

020 7352 8121 (Main Switchboard)

Royal Free, London

Sally Reddecliffe & Adele Gallimore (For Pulmonary Hypertension Enquiries)

020 7472 6354

Royal Free, London

Specialist Nurse Team

020 7830 2326

Sheffield

Specialist Nurse Team

0114 271 3086

We are working towards providing contacts at key hospitals in Wales, Ireland and Scotland please check the website for up to date information or call the Rheumatology telephone advice line (emboldened in green, listed above) with your medical query.

Local Support Contacts Our local support contacts provide support on a local level by organising support group meetings or by being available to local residents via the phone or email. If you are interested in joining one of our local groups or wish to receive some support then please contact us and we will be happy to put you in touch with your local support contact: 020 3893 5998 Local Support Contacts Bedfordshire

Rita Boulton

Exeter

Mike Corbett

Hampshire

Tracey James

Scottish Highlands

Lorraine Jack

Edinburgh

Anne Hogan

Norfolk

Lucy Reeve

South London

Celia Bhinda

Amersham

Marilyn York

Leeds

Chris Oâ&#x20AC;&#x2122;Hora

Worcestershire

Shirley Lynch

Alex’s make-up tips for scleroderma In a recent video series, our supporter Alex Marler gave our YouTube audience some great advice on how to cleanse and care for your skin with scleroderma. Read about her full nourishing routine including recommended products and tools below. How to do a quick cleanse and tone Using a dual phase makeup remover, which is fabulous on waterproof mascara and long-lasting makeup, I get two cotton swabs, give it a good shake and apply the shaken up liquid on both sides of my face. Once I’ve soaked two pads then what I like to do is just lie them on the eyes and keep them there probably a good 20 seconds. When you’ve placed it on the eye and allowed it to start working, then the mascara starts to dissolve and it loosens all the long stay makeup. Then very gently, because the skin around the eyes is very delicate so we don’t want to be stretching it too much, in circular sweeping movements I apply the soaked pads to both my eyes. Those of us with scleroderma do have very tight and often inflamed skin on the face so it’s extra important to be gentle. Once that’s done I use a micellar water, which you can find in most pharmacies and even supermarkets of varying prices. The one I use is the LA Roche-Posay micellar water which is very gentle. I then do the same thing again – making sure the cotton pads are nice and saturated – and sweep over the face especially in the hairline. I then use one more clean pad over where it’s just been. Lastly, I have a very natural rose face toner and I just do one sweep with one cotton wool pad and it just removes all the last traces of the cleanser and any makeup left. In the summer when it’s very warm it’s really nice to put these products in the fridge because it can be very soothing on the face, which is lovely.

SRUK in the News Our cover star, Georgina, had her story featured in Newsweek and Metro this month.

Oils, massage and moisturizer Due to the tightness and inflammation, which is commonly caused by scleroderma, it’s really important at this point to put back in some moisture. The skin needs both oil and water. Moisturizers are, on the whole, water-based with some oil ingredients, so it’s very nice to put a pure oil before the moisturizer and allow that to nourish the skin and soak in. Now, if, like me, you’ve got hands that can be difficult, I can’t get them totally flat on my face, but I know that some of you will have your fingers completely bent over. So what if you have and you want to apply some oil? What’s quite nice is just to get a little dish of some lovely organic rosehip oil, which is very nourishing for the skin and is a beautiful rich colour. I just put about five drops, so either with your fingers or with a little brush, apply it all over and down the neck. I then just like to spend a moment or two just gently massaging the oil into my skin. You have little lymph nodes that are nestled along the edge of your face in front of the ears especially and also down your neck and at the bottom of your throat. When you’re massaging it’s always nice to do sweeping movements out towards the lymph nodes because then they can drain away any toxins that are in the tissues and for those of us with very tight faces it’s really good to try and start moving the skin and massaging the muscles underneath. It can be quite painful sometimes, so if your fingers are bent it’s quite nice to use your knuckles and just to do sweeping movements on either side of the face. Just make sure you get around the eyes and relax those sore tired eyes. I do have a gadget purchased on Amazon which is very soft rubber and one side has got lots of little nodules that are very good for the cleansing. The other side is smooth with little ridges to hold moisturizer and oil and it charges on a USB port and gives a very gentle, little vibration. I turn it over and do sweeping movements out towards the ears, which helps the product be absorbed deeper into the tissues and also brings fresh blood to the surface of the skin which is always nourishing and has oxygen. I also normally do a little massage down the side of the neck as well, which is very nice and on the forehead, again sweeping outwards. I’d do this for a good ten minutes until the skin has fully absorbed the oil. Then I get a moisturizer like Lulu’s Time Bomb Night Cream, which has lovely ingredients, and I just put a dollop in the palm of my hands (again you could use a brush as well) and apply this all over the face. This just helps to seal in the moisture from the oil and the nourishing properties, and smells absolutely lovely. Lastly, I make sure to apply gently down the neck towards all the lymph nodes and don’t forget your ears. So that’s my nourishing routine. It’s very good for you physically as well emotionally, so I hope you try it out and enjoy the benefits.

If you enjoyed this piece contributed by our community, you can find more like it on our YouTube channel at youtube.com/ WeAreSRUK

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 12% silver long socks These 12% silver socks minimise any heat loss from the body by actively reflecting 95% of the body’s energy back to the skin. The socks will keep your feet much warmer when compared to conventional socks. Manufactured from fine combed cotton and natural silver, they have superior ultra light stretch for improved fit and comfort, allowing complete freedom of movement. s/m/l/xl £14.99 Hand warmers – individual pack/box These handy warmers can be quickly activated for instant warmth whenever you are out and about. Just open the packet for 7 hours of constant heat. Please note these are disposable and cannot be reused once opened. 1 box (includes 40 warmers) = £37.99, 1 pack (includes 4 warmers) = £4.99

HotRox Double Sided Handwarmer So simple and easy to use, this HotRox handwarmer heats up to around 45°C in just 15 seconds, has two heat settings to choose from, and lasts up to 6 hours. It’s rechargeable via USB, therefore it’s really easy to keep it topped up for your next adventure. £28.99

Snuggle up blanket Relax with a Heat Holders premium fleece blanket- perfect for wrapping up warmly on those cold winter nights. With a 1.4 tog rating, its generous size and incredible softness make it a must-have item for peaceful days at home. £24.99

Slipper socks kids frozen/star wars These super snuggly character socks are perfect as a gift for the little ones this Christmas! Heat Holders incredible warmth together with their slip resistant grip makes them perfect for wearing around the home. £10.99

as recommended by The Times

For more products and information go to www.srukshop.co.uk or call 020 3893 5998 21

Here is our selection of SRUK Christmas Cards available for purchase this year, each pack contains 10 cards. Heart hands Christmas card

£3.99

People sledging Christmas card

£3.99

Robins Christmas card

£3.99

Group deer Christmas card

£3.99

Partridge Christmas card

£3.99

Tree (Tis the season) Christmas card

£3.99

Winter in the forest Christmas card

£3.99

Blue Angel Christmas card

£3.99

Snowman and moon Christmas card

£3.99

Blue Geese Gift Wrap and tags

£4.99

Red Sheep Gift Wrap and tags

£4.99

Dachshund Gift Wrap and tags

£4.99

NEW TO 2019

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

SRUK shop Product Details Christmas Items

Cost

Christmas Cards: Partridge

£3.99

Christmas Cards: Tis the Season

£3.99

Christmas Cards: Winter in the Forest

£3.99

Christmas Cards: Snowman

£3.99

Christmas Cards: Blue Angel

£3.99

Ladies Slippers for Cold Feet (S or M or L)

£27.00

Snuggle Up Blanket

£25.00

Gift Wrap

£4.99

Qty

Size

Colour

UK 5, 6, 7 Cranberry

Stocking Fillers 12% Silver Gloves (S/M or L/XL)

£20.99

Mycoal Hand Warmers (4 packs)

£6.00

Black

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

£10.99

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

£10.99

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

£12.99

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

£14.99

Postage & 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 Get your order form to us by the 14th December to receive it in time for Christmas

For more products and information go to www.srukshop.co.uk or call 020 3893 5998

Fundraising thank yous So far this year our fantastic supporters have raised over £36,917 by taking on some incredible challenges - testing their physical and mental endurance to raise funds and awareness for SRUK. Here are just some of those inspirational stories. Congratulations and thank you to everyone who has gone the extra mile to fund our vital work. Ann Forsyth In April, Ann Forsyth, who has scleroderma and Raynaud’s, rode more than 500 miles on a motorbike through the Scottish Highlands with members from South Loch Ness Motorcycle club for SRUK. She braved freezing temperatures and challenges such as broken-down bikes and a trailer toppling over to finish the race – not an easy feat for anyone grappling with scleroderma and Raynaud’s. All of us at SRUK thank and applaud her for her courage and raising more than £1,500 to help us continue our vital work. Thanks also to members of South Loch Ness Motorcycle Club for making this possible. Race to the Stones A HUGE thank you to all of our 11 participants who ran 100KM over 2 days in the Race to the Stones, raising over £10,300! What an incredible achievement. A shout out particularly to Sylvia who has been diagnosed with scleroderma for leading the team and completing the race! We are all very inspired. Prudential Ride In August Phil, Maxine, Sharon and Suzie took on the Prudential Ride London-Surrey 100 to support their close friend Nigel Cuff who has been diagnosed with scleroderma. Sarah Carthew also took on this challenge in memory of auntie Ann. A huge thank you to all the participants from all of us at SRUK! Together they raised over £4,000.

Megan Nelson – Bob Graham Challenge In June, Megan completed a 5 day walking challenge covering a distance of 72 miles around the Lake District which involved climbing 42 summits! Having seen her dad cope with scleroderma, she wanted to take up a challenge and raise awareness! She’s raised over £2000.

We are so thankful to all those who hold events in aid of SRUK, we wouldn’t be here without you. If you have recently held an event please let us know and send us your photos to our address or you can email them to our Community and Events fundraiser Apurva at fundraising@sruk.co.uk or if you have any questions about how to host your own event and would like support please get in touch and feel free to call us on 020 3893 5993.

Carissa’s London Landmarks Experience We spoke with Carissa, one of our London Landmarks Half Marathon runners, who completed the race back in March. She’s also planning an epic adventure with her mum to hike Mount Everest next year. Why did you decide to fundraise for SRUK? SRUK is a charity that is very close to my heart as my grandmother passed away with scleroderma and I wanted to raise more awareness of the charity and illness whilst raising money.

What made you choose the London Landmarks Half Marathon? I have previously completed and run the Royal Parks Half Marathon and wanted to take on a new challenge and run a different half marathon. When I was offered to do the London Landmarks Half Marathon for SRUK, I couldn’t say no!

What did you enjoy most about the race? The route. You go past some amazing landmarks of London (so make sure you try to enjoy that – I probably didn’t as much – easier said than done) and also the fact that there are plenty of chances of seeing any loved ones supporting you throughout; I saw my mum and boyfriend at least 5 times which gave me that extra push and motivation to keep on going!

What benefits did you get out of running a half marathon? Apart from the health benefits, it was knowing I can actually run that type of distance. For someone who never used to be a runner, if I can do it, then anyone can if they put their mind to it.

Your top tips for our 2020 LLHM participants…

Train, get a good night’s sleep the day before, soak up the atmosphere on the day, but most importantly enjoy it! You are doing something amazing, raising money for an important and amazing charity and running for someone special that you care about!

If you would like to follow in Carissa’s footsteps - we have places available for the 2020 London Landmarks Half Marathon on 29th March. Call Apurva on 020 3893 5993

Festive Fundraising ideas Our community is always so generous at Christmas and as the winter nights start drawing in, here are some of the ways that you could keep warm and fundraise over the festive season. Add SRUK to your Christmas wish list and ask for donations rather than presents. Christmas get together - invite your friends and family round for festive nibbles, cakes, games and fun – rather than give gifts ask for a donation. Organise a Christmas Sing-a-long – whether it’s Carols or Cliff; have fun singing classic Christmas songs and raise money at the same time. Shop with us - we have a great selection of Christmas cards as well as some winter essentials. Shop with Amazon Smile – it’s free, just go to smile.amazon.co.uk, choose us and Amazon will donate 0.5% of your bill every time you shop! Christmas films – get your friends round or have a film day in the office – they could pay to play their favourite or donate for their mince pies and popcorn!

£10

£25

£50

could provide a lifeline to someone in need by making sure our trained helpline volunteers are there to answer their call.

could help a family attend a specialist education event to learn more about managing their child’s condition

could fund a research nurse, for a day, taking skin samples to better understand the progression of fibrosis

We are here to help with any of your fundraising activities so please call and speak to our friendly team on 020 3893 5993 to get materials, advice and support from us.

Ways to support us Firstly, we would like to say thank you. By receiving this newsletter 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. Our Winter Issue will cover what we already know about what triggers the conditions, and the work we’re funding to learn more about the root causes. Your feedback is really important to us. If you have a comment or suggestion for a story you think we should cover 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.

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

/WeAreSRUK