Support group would help people like Marilyn
A 56-YEAR-OLD woman who has been suffering with a rare syndrome for the last 44 years is backing calls for a support group to be set up in the city.
Marilyn Ashby was diagnosed with Myasthenia Gravis when she was 12 years old. The condition affects the nerves and can attack any part of the body.
Marilyn receives help from the Myasthenia Gravis Association, a national charity based in Derby.
But even though it is based in the city, the charity does not have a Derby support group for people with the condition, despite having them in other places across the country.
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Now the association has received a £900 donation which it will use to set up a local support group.
Marilyn, from Chaddesden, said: "It would be great to have a group on my doorstep so I could speak to other people who know what I am going through.
"I have had it for many years and can share my experiences of coping with it.
"I would let people know that you can live with it."
Myasthenia Gravis Association was presented with a £900 cheque from the John Lewis Community Matters scheme.
The charity was nominated by customers visiting the Nottingham store.
Ruth Ingledew, chief executive of the charity, said the money will go towards trying to set up a dedicated support group for sufferers in Derby.
Ms Ingledew said: "There are groups around the country that meet in community centres, pubs – anywhere they can, really – and it'd be great to get one in Derby.
"It's also to show that there is still a life for you, even if you've been diagnosed with it. It’s very treatable but it is very difficult to live with.
"It's so rare and people will often think that it means the end of their life as they know it, though that's not the case at all and we're here to help with the transition."
Marilyn said that the first sign she had the condition was when her eye closed one day when she was at school.
She said: "It was really strange and I didn't know what it was at first.
"But then I got a diagnosis and that made treating it better.
"But I had a droopy eye and had to walk around with my head back to be able to see when I was walking around.
"This made me a target for bullies and it was tough going through school."
Myasthenia Gravis is not a degenerative disease and is kept under control with medication, usually steroids.
Marilyn said: "I've been taking steroids for many, many years now and they have side-effects of their own.
"I walk with a stick most of the time but that hurts my hands."
To find out more, visit www.mgauk.org.uk.