*Support Groups - Coronavirus Update*
Some of our support groups are beginning to return to face to face meetings.
As a health organisation, our focus is to continue supporting our group leaders and all group members. For this reason, some of our groups are still only taking place over zoom.
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 bring people 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.
Some support groups meet very regularly, either face to face or online. Some support groups meet less regularly.
Families & Children - *on temporary hiatus*
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.
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..
Exeter - *on temporary hiatus*
If anyone would like to apply to be support group lead then email email@example.com
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. 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.
Portsmouth *on hiatus*
If you would be interested in leading a support group in the Portsmouth / Hampshire area, please contact email@example.com
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.