What is FSH Muscular Dystophy?
FSH (facio scapulo humeral) Muscular Dystrophy is a muscle wasting condition, caused by a genetic fault, which may be affecting the regulation of the level of many of the different proteins in muscles. The name describes the usual distribution of weakened muscles: facial, shoulder blade, upper arm. However, the legs can also be affected. In Britain, the frequency is at least one person in every 50,000, and probably closer to one in 20,000, accounting for between about 1200 and 3000 cases in all. FSH muscular dystrophy is type-specific but non-life threatening, yet often it is not fully understood by clinicians or sufferers as there is a lack of prevalent information on the condition.
Motivation
Lorraine Jonas decided to set up an FSH self-help group when her daughter was diagnosed with the condition 17 years ago. Not knowing anything about the condition, she was given an article from a 1940s health journal to read but no other information or clinical advice. At the time the national charity, Muscular Dystrophy Campaign, focused on fundraising and research rather than information dissemination, and Lorraine felt that the one page of information which was available at that time was ‘unfriendly' and uninformative.
Setting up the self-help group
Consequently she made contact with around ten people with the same condition, and their carers; some of whom did not know anyone else with the same diagnosis, and most of whom had received little after-care from the health service. The first meeting was held in a hotel in London and through word-of-mouth, the membership has now grown to 300 people, based around the UK. Lorraine wanted to ensure the self-help group was set up properly, and did not give clinical advice when individuals were not qualified to do so, and believes that limiting the number of volunteers to two reliable colleagues, has helped to ensure the success of the group. The volunteers are Lorraine, her husband and the Chairperson who has FSH muscular dystrophy (there have been several over the 17 years of the group).
What the FSH Group does
The group provides information and support to people with FSH and their families and carers. When someone contacts the group, usually because they are newly diagnosed with FSH muscular dystrophy, Lorraine calls them up to discuss any queries they might have, then sends them an information pack, which includes a user-friendly leaflet and details of the FSH group website. The Chair then follows up with another call to have a friendly chat and to answer any further questions.
As well as keeping the website up-to-date and a bi-annual newsletter which includes articles from members, the group gives leaflets to GP surgeries and hospitals, and as a result, receives some referrals from clinicians. The number of queries varies – anything from 2 per month to 6 a week. As well as national enquiries, Lorraine receives some international calls from people with FSH and their carers.
Annual conference
The group also organises an annual conference in different parts of the UK (as membership is spread across the country), and invites clinicians, physiotherapists, alternative therapy practitioners and family care officers from the Muscular Dystrophy Campaign to give presentations.
Lorraine gets great satisfaction from helping people who otherwise would have nowhere to go for help and she enjoys being able to offer advice and assistance to people who may feel they have limited information about the condition.
For more information, please contact:
Lorraine Jonas
Secretary
FSH Muscular Dystrophy Support Group
Tel: 01923 257 251
www.fsh-group.org
