Get involved with SRUK in your area, find Support Groups and specialists
We have 10 support groups across the UK that enable people to come together to discuss and share issues around living with these conditions. Each support group is run by a support leader who maintains contact with all the members. All group leaders are volunteers who have experience of the conditions themselves.
Some support groups are designed to provide advice and information by email in response to member questions. Other groups are run as telephone meetings as it is sometimes difficult for members to attend in person. Some groups do arrange meet-ups, or feature a combination of all the above depending on member needs.
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. For queries about this support group use this form to contact us.
I am a retired 67-year-old 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! For queries about this support group use this form to contact us.
One dark February evening in 2016, saw the first signs of the condition. My hands were hurting, all my 8 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 who said it's 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 by me so 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.
My affections by my condition is one 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. For queries about this support group use this form to contact us.
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. For queries about this support group use this 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 symptom's 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. For queries about this support group use this form to 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 firstname.lastname@example.org and we will put you on the mailing list. For queries about this support group use this form to 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. For queries about this support group use this form to contact us.
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 call support. Support leader: 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. For queries about this support group use this form to contact us.
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. For queries about this support group use this form to 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. For queries about this support group use this form to 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 patchwork and quilter. For queries about this support group use this form to contact us.
Get involved with SRUK in your area, find Support Groups and specialists
Find out more information on your local support group or tell us if you're interested in setting one up
Meet people in our online communities who share the condition of Scleroderma or Raynaud's.