Our Support Groups Our Support Groups throughout the UK are continuing to offer ongoing support to people living with Scleroderma and Raynaud’s, as well as to their partners, families and friends. Our amazing group leaders have found creative new ways to help keep everyone connected throughout the coronavirus crisis - until we meet again. Some groups provide advice and information by email in response to member questions. Others are holding telephone meetings for the time being until it is safe to meet in person. Some combine all of the above, based on what their members need. Each group is run by a support leader who is a dedicated volunteer and has been affected by these conditions. In this edition, we take a look at the support network in Scotland. Scleroderma Support Groups in Scotland – The Story So Far There are two Support Groups in Scotland. The Edinburgh Group is run by Anne Hogan, who was diagnosed with Raynaud’s, Scleroderma and fibromyalgia in 1996. The group is designed to provide support to anyone who is affected by these conditions and to help promote awareness. “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.” Anne Hogan, Support Group founder In the Scottish Highlands, The Scleroderma & Raynaud’s Support in Scotland Facebook group was created by Lorraine Jack in 2017, when the chat group became increasingly hard to manage after it exceeded 20 members. She then started the Scleroderma Support Group in Scotland, and the membership has quickly grown to 117 and counting. Lorraine has systemic sclerosis and ILD with scl70 antibodies; and previously had Raynaud’s phenomenon. “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 somebody in their local area, or not too far away”. Lorraine Jack, Support Group founder The Support Groups are designed to reach out to affected people in Scotland, and everyone is welcome. They provide a safe space that offers friendship and ongoing support; and enable people to share knowledge, information and personal recommendations with one another. Most people come to the groups for friendship and advice. No subject or question is off-limits, and members can ask about anything, from recommendations for medications or specialists; to opinions on whether certain symptoms are actually typical of Scleroderma, although as ever it is always advisable to speak to a GP or rheumatology nurse with any medical concerns.
Lorraine Jack
Normally, there would be regular meetings, plus various catch-ups in local areas that anyone is welcome to join, involving just a chat over a drink or some lunch. These are usually upbeat and full of humour, although if anyone does have particular concerns, these can of course be shared. Although at the time of writing it is still not possible to meet face-to face, the youngest member of the Highlands Group has been holding weekly Zoom chats, which have proved to be a great success in enabling everyone to keep in touch.
Find your nearest Support Group To find out where your nearest Support Group is, please call us on 020 3893 5998 or email info@sruk.co.uk. Local Support Contacts Amersham
Marilyn York
Norfolk
Lucy Reeve
Bedfordshire
Rita Boulton
Northern Ireland
Una Gillespie
Birmingham
Avtar Gill
Portsmouth
Tracey James
Edinburgh
Anne Hogan
Scottish Highlands
Lorraine Jack
Exeter
Mike Corbett
South London
Celia Bhinda
Leeds
Chris O’Hora
Worcestershire
Shirley Lynch
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