A NEW support group for Muscular Dystrophy sufferers is to be set up in East Lancashire. The Muscular Dystrophy Group's national organiser Lyn Inman, will visit Darwen in the next few weeks to help with the plans and publicity for the support group. So how does Muscular Dystrophy affect people and what impact will the new support group have on their lives? RACHEL PINDER reports.

JOHN Cowell was born with Spinal Muscular Atrophy, which has slowly got worse. He has been crying out for a Muscular Dystrophy support group in Darwen so he can get out and meet other people with the condition.

He used to fall over a lot when he was at school, and he went to Blackamoor Special School when he was 10. He started using a wheelchair when he was 16 as he couldn't cope with using the stairs. His dad, Peter, looks after him at their home in Birch Hall Avenue, Darwen.

John, 35, said: "I need help getting out of bed, getting dressed, using the shower and getting out of the house. I think a support group is definitely needed in this area. I met lots of other people with Muscular Dystrophy when I was at college, but since then I've not met anyone with the illness. People need to be made aware of Muscular Dystrophy and we need to be able to talk to other people with the disability, as well as getting help and advice."

John left Hereward College, in Coventry, with eight O-levels and he has been an avid season ticket holder at Blackburn Rovers since 1976. He added: "I'm not sure how the support group will work, as I am pretty much in the dark about it at the moment. But I'm looking forward to getting out and meeting people and going on organised trips. I'm also quite keen to get involved with the setting up of the group."

Muscular Dystrophy is a gradual wasting and weakening of muscle tissue, which could be facial, upper or lower body, depending on the condition. Both adults and children can be affected by the condition, which eventually leads to varying degrees of disability. Sometimes, people have mild symptoms which only begin to show during adulthood, whereas sometimes, children are so severely affected from birth that they do not live long.

The Muscular Dystrophy Group is a national charity, which celebrates its 40th anniversary this year. The group invests in research to find treatments and cures for the condition and offers support to families and individuals living with neuromuscular conditions. There are currently 200 branches throughout the country and 200 individual representatives.

The support groups work with a nationwide team of 14 Family Care Officers, who are based at hospitals and work closely with individuals and families in their area. Pat Sudlow is the Family Care Officer for the North West, including East Lancashire. She is based at the Children's Development Centre at Alder Hay Hospital, in Liverpoo,l and works with consultants specialising in neuromuscular disorders as well as offering practical and emotional support to families. There are support groups across the North West in Blackburn, Preston, Wigan and Tottington, but a lot of people who have Muscular Dystrophy cannot travel long distances. The new group will be run from Birch Hall Nursing Home, in Darwen, which is owned by Ashbourne Healthcare, and organisers hope it will get off the ground in June.

They are tying in the launch of the group with a sponsored walk from Blackpool Football Club to Blackburn Rovers, to raise money as well as awareness about the condition. Accessibility is a big problem, but Birch Hall boasts a range of disabled facilities which will make all the difference to people who join the new support group in Darwen.

Gill Entwistle, general manager at Birch Hall Nursing Home, explained that a new young disabled unit is due to be opened in the next few months at the home, which, she says, will offer even more support.

She said: "Carol Norman, a nurse at Birch Hall, suggested setting up a Muscular Dystrophy support group at Birch Hall and I thought it would be an excellent opportunity to provide a service using our facilities for the disabled. We have disabled toilets, lifts, ramps, and catering facilities. We can also provide assistance if required. It will be something new and exciting - a real challenge. We have strong links with the Multiple Schlorisis Society, which has been very successful, so we are hopeful that this new support group will really work."

Carol got involved with the group as her neighbour, Elaine Freear, has Muscular Dystrophy and discovered there was no support group when she moved to the area from Lincoln. Her husband, Roy, has been actively involved in many fundraising events for the condition. Elaine's daughter also has Muscular Dystrophy and her sister died three years ago from the illness.

Elaine said: "The area needs a support group for Muscular Dystrophy sufferers. A lady I know has to go to a Multiple Schlorsis support group because there is no other support available. It's going to really help people like me and it might give the people who have to look after Muscular Dystrophy sufferers a break. I'm all in favour of it."

Lyn Inman, National Field Manager for the Muscular Dystrophy Group, said: "Each branch works in line with the support group, by meeting monthly to share information. If people get together as a branch they can support and help each other. Ideally, at some of the meetings, we will have a speaker, covering topics such as physiotherapy and benefits for the disabled."

For more details call Lyn Inman on 0113 230 1313.

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