Support group leaders

Our support groups are to support people with scleroderma or Raynaud's, their friends or family.

We have 10 support groups across the UK for people to come together to discuss and share issues around the conditions. Each support group has a support leader that runs the group and keeps in contact with all the members. All group leaders are volunteers who have experience of the condition themselves.

Some support groups are run by providing advice and information by email to member questions. Other groups are run as telephone meetings as it's sometimes difficult for members to attend meetings in person. Some meet in person, or are a mixture of the above depending on member needs.

Norfolk

Lucy

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.

Merseyside

Diane

I was diagnosed with Diffuse Systemic Scleroderma on 29 June 2012, World Scleroderma Day. I have GI, pulmonary, renal involvement and also secondary Raynaud's, hypertension, angina and more recently small vessel disease. I first found SRUK's website when I was trying to gain information about my condition. Since then I have met up with a local contact, which helped me, to becoming one myself. Support is so important when faced with a chronic condition and I have been so lucky with mine from the clinical side to all my family and friends and of course SRUK! I am looking forward to using my own experiences to help and support others who are going through a similar journey. For queries about this Support Group use this form to contact us.

Bedfordshire

Rita

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 7 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 that 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.

South London

Celia

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 with their 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.

Portsmouth

Tracey

Location: Portsmouth, caters for Hampshire area. Support is for: People with 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 the 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 I have an extensive cd and vinyl collection, I am an Archer's fan (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

Exeter

Mike

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. Along the way I have picked up a couple of other associate diseases G.A.V.E. Liver cirrhosis (M3 anti body), 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 a 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 mental health effects on a couple. My aim is to lead a positive life. My reason for being a local support contact is being 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.

Scottish Highlands

Lorraine

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 2 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 as 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.

Amersham

Marilyn

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.


Worcestershire

Shirley

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 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.

Leeds

Chris

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 2 hour support group sessions every 6 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 sruklsg@gmail.com and we will put you on the mailing list. For queries about this Support Group use this form to contact us.

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