*Support Groups - Coronavirus Update*
As a health organisation, our focus is to continue supporting our group leaders and all group members.
We have advised our support group leaders to suspend all upcoming face-to-face meetings, following the government advice that people who are immunocompromised should avoid social contact.
Several of our support groups are now running virtual meetings to stay connected.
Our support groups are still here to offer ongoing support to anyone affected by Scleroderma or Raynaud's, and their family and friends.
We have support groups across the UK that enable people to come together to discuss and share issues around living with these conditions. Each group is run by a support leader who maintains contact with all members. Our group leaders are all volunteers who have some experience of these conditions themselves.
Face-to-face meetings can resume once the epidemic has cleared, and we will keep you updated with guidance on when it will be safe to attend meetings again. This guidance will support efforts to delay and contain the threats posed by the coronavirus outbreak.
Some support groups are designed to provide advice and information by email in response to member questions. Others are run as telephone meetings, since it is sometimes difficult for members to attend in person. Some groups combine all of the above, depending on member needs.
Families & Children
Hi I’m Alison, I’m 48yrs old and live in South Yorkshire with my husband. I have three daughters aged 18,12&9 yrs old and also have two cats and a crazy cavapoo called Teddy! In my spare time I like reading, cross stitch, rugby and holidays!
My two youngest daughters both have localised scleroderma, Eliza was diagnosed at 4.5 yrs old after 15 months and was originally under the Rheumatology team at Alder Hey. Eleanor was then diagnosed at 5 yrs old, they are both currently on treatment and are seen regularly by the wonderful Rheumatology team at Sheffield Children’s Hospital. Thankfully their Scleroderma is under control and at the moment isn’t causing them too many issues.
I wanted to become a support group leader as I understand how overwhelming and lonely it can be having a child with Scleroderma as it is so rare and not many families have experience of it. I feel it’s important to know, you are not alone in your journey and I would like to give support, particularly to families of newly diagnosed children who will have many worries and questions.
My daughter Erin was diagnosed with linear scleroderma when she was 6 years old. We went through every doctor at our surgery with unusual symptoms before we were lucky to come across a GP who recognised the symptoms and referred us to a specialist in Cheltenham where we used live.
Erin’s scleroderma involves her head, eyes, back, hip, leg, and foot. Erin’s scleroderma progressed quickly and because it involved joints has left Erin with permanent damage. Erin has to use aids to help her get about and she also has regular lipofil operations to inject fat into the soles of her foot as she has large fat and muscle wastage.
We were lucky to attend an SRUK family day a few years ago and this put us in touch with other families. The day was a lifeline to us as previously we felt very alone, we are still in touch with a lot of the families we met. We quite often compare notes, get new ideas or chat about how we are feeling with other parents. Erin has made a lifelong friend with another young lady her age and they often message each other offering each other support.
We have come across a few people in our area who have children with scleroderma and the conversation is always the same, they always feel like they are the only ones and have no one else to talk to and it is always a relief to meet someone who understands how scleroderma impacts their daily lives. It would be a fantastic opportunity to help raise more awareness about Scleroderma and offer support to children and families that are affected by this rare condition.
To join this support group, please call our main number on 020 3893 5998. You can also use the form to contact us.
I was diagnosed with Raynaud's in 1988 and with scleroderma in 1993. I belonged to the Raynaud's and Scleroderma Association for many years. I have run a number of support groups in the past and wanted to help others learn about the condition and the possible things that may help; sharing issues and learning from others has been a very rewarding experience. To join this support group, please call our main number on 020 3893 5998. You can also use the form to contact us.
I am now retired and have been living with Raynaud's and scleroderma for ten years. I gave up my job at a large DIY store seven years ago due to health problems. My limited scleroderma mainly affects my hands and mouth.
I joined both the RSA and The Scleroderma Society at a scleroderma family day at the Royal Free Hospital in the first year after diagnosis, to find out as much as possible about the conditions. I sell my handmade cards locally to raise funds for research.
I started the local support group some six years ago, shortly after volunteering as a local contact when I had a phone call from a lady so pleased to have someone to talk to who understood how she was feeling. Our present group of six meet up every 2/3 months. We are not all living in Bedfordshire, we have one lady from Milton Keynes and another from Welwyn Garden City! To join this support group, please call our main number on 020 3893 5998. You can also use the form to contact us.
One dark February evening in 2016, I saw the first signs of the condition. My hands were hurting and all my fingers had gone white with no warning whatsoever. I made an appointment with the GP, who was concerned with the condition of the hands. Secondary Raynaud's was diagnosed and recently one of our group members said: 'what is it secondary to?' I thought that was a very good question as I never thought about it as I was just muddling through. I asked the hospital on my next visit and was told that it is secondary to a very mild case of scleroderma, and I have been under the rheumatology unit at the local hospital ever since.
I set up the Birmingham group because I very selfishly wanted to know all I could about this disease. I tried searching the internet first. If I wanted to search the internet, doctors told me only to go on the NHS sites. There was nothing around Birmingham or the surrounding area, so I needed and wanted to see folks who could shed light on what was happening to me as well as seeing what this condition could possibly develop into.
One consequence of my condition is that I lost the job which I loved as a fully qualified automotive glazing technician. Due to handling glass and sharp tools, I had to be let go of under capability.
I was diagnosed with Raynaud's, scleroderma and fibromyalgia in 1996, when I then joined both The Scleroderma Society and the RSA. With my fluctuating diagnosis I stayed with the RSA because they had information on all my possible conditions. I attended RSA conferences when able and have attended the SRUK conference in Glasgow recently. Over the last 23 years I have frequently contacted the society for up-to-date information. I look forward to the magazine and I live in the silver gloves and socks. As the Edinburgh Support Group leader, I hope to be able to support others going through the difficult time of diagnosis and help promote awareness of scleroderma and Raynaud's in the Edinburgh\Lothian region. To join this support group, please call our main number on 020 3893 5998. You can also use the form to contact us..
My wife Alison and I live in Exeter. I was diagnosed with limited cutaneous systemic sclerosis ten years ago, as is usually the case I now know I had the symptoms for a number of years prior to this. Along the way I have picked up a couple of other associate diseases: G.A.V.E., liver cirrhosis (M3 antibody), and scleroderma/intestinal failure. I was a life member of The Scleroderma Society and naturally moved forward with SRUK. I have recently been an active member of an SRUK Community Member Research Panel and supported my wife at the 2018 Conference where she led a workshop on the effects on a partner of a scleroderma sufferer, which included the mental health effects on a couple. My aim is to lead a positive life. My reason for being a local support contact is that I felt I would like to be part of a local group that supports each other. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
This is a newly-formed SRUK Leeds support group; some patients based at Chapel Allerton Hospital were asked by our specialist nurse to form a support group. Our aim is to support all scleroderma and Raynaud's patients, share information and support SRUK with fundraising. We intend to have two-hour support group sessions every six weeks or so. These sessions will be 50% social and 50% informative – we hope to have a speaker at each of these sessions. We are always looking for new members so please email email@example.com and we will put you on the mailing list. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
My name is Nicola and I was diagnosed with scleroderma in June 2021 after I’d noticed my Raynaud’s symptoms becoming worse. I’d never heard of scleroderma before and initially, I spent a lot of time searching the internet to understand the condition and scared myself. Luckily, I was seen by very good health care professionals who corrected a lot of what I read!! I wanted to set up this support group to help others in the area diagnosed and living with scleroderma and Raynaud’s. I hope it will be a positive place where people have access to and receive the right information, learn helpful tips through the experience of others and develop friendships. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
Merseyside and Cheshire
I’m Pam Neagle and I live in Wirral in NW England and I work as a Research Project Coordinator at The Royal Liverpool Hospital. I was diagnosed with Systemic scleroderma 4 years ago, I also have Raynaud’s in both my hands and feet, the SSc affects my joints mostly and I also have Barrett’s Oesophagus, from the GERD associated with SSc, but I am determined not to let this condition get the better of me! Knowing very little about Scleroderma when I was diagnosed, I began to think that there may be other people like myself, who would like to know more and get together to share experiences, which led me to the idea of forming a network for the Merseyside and North Wales area. Through the network I hope we can give each other support, friendship, laughter and practical advice. I hope that you can join me on this new and exciting venture. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
My name is Lucy and I am the local contact for Norfolk. I have lived just outside Norwich all my life, and so have most of my family and friends. I have had Raynaud's since being a very young child, and a mixed connective tissue disease which first came to light in 1994, when I experienced severe inflammatory arthritis. In 2004, I was diagnosed with limited systemic sclerosis, and latterly I have also developed features of lupus.
I said I would be a support leader because I wanted to provide others with the type of advice and support I was looking for when I was diagnosed. As a health professional who has always worked in rheumatology, I recognise I also have quite a lot of helpful information that would benefit others. Due to my health situation I now work very part-time but I like spending time with friends, drinking tea and eating cake, reading, cuddling my cat and knitting. I also have an addiction to home design programmes.
When I was diagnosed, I wanted further information about the condition, and I looked to the internet to see what charities were available to provide that advice or support, where I found The Scleroderma Society. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
I felt very alone in my battle with Scleroderma. Through attending SRUK annual conferences in the Royal London Hospital I realised that there were treatments available to patients in England which do not appear to be available to Northern Ireland patients. This was the driving force behind my fundraiser. I knew awareness of the condition needed to be raised in Northern Ireland as well as the UK.
Since undertaking my fundraiser I have found many fellow patients of whom I was completely unaware. In our conversations we have compared our various health conditions and our various treatments. The satisfaction I have derived from discussion with fellow patients and their advice and encouragement has been inspirational.
Through this group we could offer support and encouragement for people living with scleroderma and Raynaud's, sharing of available treatment between one another, raising the profile of the disease and ensuring co-operation between medical authorities and endeavour to further highlight the need for government support. The condition is incurable at present but with timely and proper support life quality can be enhanced and life expectancy significantly extended. There is better support from Medical Care England and there is no reason why such a standard of support should not be available to patients here in Northern Ireland. A Support and Action Group must endeavour to rectify this treatment imbalance.
Location: Portsmouth, caters for Hampshire area. Support is for: People with a diagnosis of scleroderma or Raynaud's, their family, friends or carers. Meeting times: Flexible, or phone support is also available.
My name is Tracey and I have been a member of Scleroderma and Raynaud's UK since 2001 when my beloved dad, Robert, was diagnosed with the condition. I am a teacher by day. I love music and live gigs and I have an extensive CD and vinyl collection; I am an Archer's fan (I do not watch much TV but love radio 4 and 6). I love walking and cover many miles each week. I also enjoy reading, current affairs and modern art.
I was diagnosed with scleroderma in 2013, and had Raynaud's phenomenon previous to this. I have diffuse systemic sclerosis and ILD with scl70 antibodies.
I was aware from the start of the creation of SRUK, when the two charities came together. I often direct newly-diagnosed patients to the website and also share any relevant info pertinent to any questions they ask on our Facebook page.
I am looking forward to having our group added to the support group leaders as it will hopefully reach some Scottish members who are looking for some local support and friendship. The reason I became a support group leader is that I felt there were a few people around my local area looking for some friendship, guidance and support so they don't feel alone with the disease. It's amazing when people realise there is another scleroderma sufferer in their local area, or not too far away.
I am also a volunteer trainer for a local partnership called LGOWIT. I help run self management courses for people with long-term health conditions as I am a qualified facilitator trainer. This means I feel able to encourage and support someone who contacts me through Scleroderma Support Scotland. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
I was diagnosed with scleroderma over twenty years ago, and although it has been a life-changing experience, I have found that having accepted the condition and having adjusted to it, I have been able to live life as near normally as possible. In this respect, SRUK has been extremely helpful over the years, beginning with their telephone support line, then their ongoing informative publications and enabling me to contact and meet others in my area with scleroderma. Our group has grown steadily over the years and we meet informally every three months. I know how valuable being able to talk to other people with scleroderma is to me and facilitating others with the condition to do the same is a very positive experience. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
Location Brighton-Hove. Covering all The Sussex area. The group is set up for people with a diagnosis of Scleroderma or Raynaud’s, their families, and carers. Meeting times are flexible for face to face, on Zoom or telephone support. My name is Linda, and I am a member of Scleroderma and Raynaud’s UK. I was diagnosed with Raynaud’s in 2000 and Scleroderma in 2007. I was medically retired 2010 as a senior social worker. I am currently a Shared Lives Carer for two young ladies with learning disabilities and Autism. I have been a career for 4 years. I love reading crime books and watching documentaries on criminal minds and crime films. due to Scleroderma. Before becoming a social worker, I was a prison officer and this I guess is how I became interested in this type of books and programmes. To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.
I am 80 years old and was diagnosed with Raynaud's in my early 30s though I feel sure I have had it since childhood. I was diagnosed with 'CREST,' now limited systemic sclerosis, 19 years ago, and have some overlap symptoms of Sjogrens, together with muscle and joint pain, though I am fortunate not to have calcinosis. I joined RSA after my husband died in 2002, it was a great relief to meet other people with similar problems, and I have made good friendships. In 2005, knowing the value of such groups, and with my second husband, we set up a support group under the umbrella of the RSA. We had about 12 members and were quite active, in a small way, raising funds for the Association, hard work at times but good fun. We now have 15 members from Worcestershire and Gloucestershire but over the last few years, due to increasing age and illness we have met twice a year for a pub lunch and keep in touch by phone or e-mail. New members are always welcome. We find the SRUK Conference particularly helpful and the new magazine is excellent. I enjoy gardening, watching the birds both in our garden and in our local woods and water meadows. We are both involved with church activities and I am a keen patchworker and quilter.
I was diagnosed with scleroderma 7 years ago but am sure I had symptoms of the disease and Raynaud’s for many years before hand. As I know no one in my area with scleroderma I have been interested in joining a support group. There is no group in the area so Rachel and I, with the support of Ollie and SRUK, hope to start and co-lead one.
I attended 3 SRUK conferences as well as the scleroderma family day in the Royal Free Hospital. I gained a lot of valuable information about the disease in these conferences. I realised that there were treatments and clinical trials available to patients attending specialist hospitals in England, information of which would benefit us in Wales. I completed the SPIN-SSLED leaders course last year and gained further knowledge about support groups. The aim would be to support, share information and experiences, gain knowledge, start friendships and reduce the loneliness that many scleroderma patients feel.
To join this support group, please call our main number on 020 3893 5998. You can also use the form on contact us.