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Support group set up for muscular dystrophy sufferers
A SUPPORT group for people with muscular dystrophy has been set up by a York woman whose father died at the age of 58 following a long struggle with the disease.
Clare Russell, 30, from Clifton Moor, set up the fundraising and support group after seeing her father, Peter, battle the illness for years, and is kicking off 2013 with a huge fundraising campaign which she hopes will raise £10,000 for research into the muscle wasting condition.
She said: “My father passed away in November 2011. He had the illness for years and my mum was his carer for a long time.
“After my dad passed away we met up with some ladies from the Muscular Dystrophy Campaign and we had the idea of fundraising. We said we just wanted to do some different things to raise money.”
Her determination to raise £10,000 will see Clare attempt her first skydive in march and she has also organised a charity ball to take place two weeks later.
Last year she joined her mother Jane, 53, brother Chris, and his girlfriend, to complete the Great North Run.
As well as raising money, Clare intends to offer support to people with muscular dystrophy, to ensure they are getting access to the best services.
She said: “We wanted someone in our area who people could talk to. We have not had anybody approach us yet but we want to act as a guide to people on a local level.
“My mum went through quite a lot and we just want to be able to signpost people to the right help.”
She said: “There’s no typical prognosis. It’s hard to offer an all-encompassing support service so we are there to signpost people.”
The fundraising ball takes place on March 16 at the Marriott Hotel in York. For ticket information, details on how to sponsor Clare, or advice on muscular dystrophy, phone 07561 105 171.
Concern over muscular dystrophy ‘misdiagnosis’
PATIENTS in Yorkshire with serious muscle-wasting illnesses are being misdiagnosed or face long waits before a diagnosis is made, according to a national charity.
The Muscular Dystrophy Campaign says nearly half of patients in the Yorkshire and Humber region had their condition misdiagnosed, with 70 per cent having to wait more than a year for an accurate diagnosis.
The figures, contained in the charity’s State Of The Nation report, also say some families are forced to travel hundreds of miles for treatment.
Brian Deehan, from Driffield, said his, 31-year-old son has muscular dystrophy, said he had to travel to Newcastle for vital physiotherapy and that patients in Yorkshire felt there have been very few improvements to services” in their own region.
He said: “For now, our 220-mile journey to Newcastle and back must continue, as must our self-funding physiotherapy.”
The Muscular Dystrophy Campaign is now calling for the immediate recruitment of the two new neuromuscular physiotherapists, which it said was promised by NHS leaders in March last year.
York Hospital declined to comment on what it said were figures which affected a wide area of Yorkshire.