Support group leaders

Our Support Groups are to support people with Scleroderma or Raynaud's, their friends or family.

We have 8 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.

Newcastle and Northumberland

Lindsay Wilkinson

I'm 52 years old. I was diagnosed with CREST syndrome in 2010 following a serendipitous meeting with my GP who had just read an article on that now defunct acronym. I had previously been misdiagnosed with ME in 1997, so have had Sclerosis for over 20 years as the symptoms have been affecting me since my 20s. It has affected me profoundly-especially my physical/mental health-but very recently I bought a puppy and he has helped to get my physical fitness back on track as well as my mental state. For queries about this Support Group use this form to contact us

Norfolk

Lucy Reeve

My name is Lucy Reeve 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 a mixed connective tissue disease which first came to light in 1994, when I experienced severe inflammatory arthritis. Then in 2004 I was diagnosed with Limited Systemic Sclerosis, and latterly I have also developed features of Lupus. I am an Occupational Therapist, and I have always worked in Rheumatology. 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. For queries about this Support Group use this form to contact us

Merseyside

Diane Unsworth

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 Boulton

I am a retired 63 year old and have been suffering from Raynauds and limited scleroderma for seven years. I joined both the RSA and the Scleroderma Society in the first year after being diagnosed in order to find out as much about the condition as possible. I started the local support group some three 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. We have met up every 2 months since. For queries about this Support Group use this form to contact us

South London

Celia Bhinda

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, the Scleroderma Society (SRUK) has been extremely helpful over the years with telephone support, its ongoing informative and encouraging publications, and in enabling those affected to meet others in their local areas for mutual support. For queries about this Support Group use this form to contact us

South Wales

Belinda Thomson

I live in Cardiff and have had scleroderma for over 16 years. My first contact with the society was to join and speak to someone with scleroderma, which I found really reassuring, and the information I was given was excellent. I then became part of what we fondly call the help liners about 14 years ago, which I find very rewarding. It's nice to speak to other people who are in the same situation as yourself, so if you would like to have a chat give me a call. For queries about this Support Group use this form to contact us

Portsmouth, UK

Tracey James

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 Corbett

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. My aim is to lead a positive life and I am still working all be it part time for Exeter University. As a Local Support Contact Ali and I meet one other sufferer regularly for coffee and a catch up. For queries about this Support Group use this form to contact us

Scottish Highlands

Lorraine Jack

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, Herefordshire

Marilyn York

I was diagnosed with Raynaud's in 1988 and with Scleroderma in 1993. I belonged to the Raynaud's and Scleroderma Society for many years. I have run support groups in the past and wanted to help others learn about the condition and the possible things that may help. For queries about this Support Group use this form to contact us

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