8:33am Thursday 4th March 2010
A WANTAGE man has spoken of his battle with a rare muscle-wasting condition as a new film hits cinemas highlighting the disease.
Peter Constable, 51, of Blackcroft, Wantage, was diagnosed with Pompe disease a decade ago.
He has difficulty even standing up because of the rare metabolic muscle disorder.
It affects about one in 40,000 people, causing muscles — mainly those for breathing and mobility — to weaken because of a shortage of an enzyme.
A new film, Extraordinary Measures, starring Harrison Ford, tells the story of a family struggling with Pompe disease.
It focuses on one man’s quest to find a treatment for his two affected children.
Mr Constable said he had not yet seen the film, but was glad to see the condition was getting exposure.
He recalled his GP having “no idea” about the disease when doctors first discovered he had it.
Mr Constable said: “I do hope it will raise awareness because although it’s a rare disease, it is very debilitating and can strike individuals and families without warning.”
Oxford-based biotech firm Genzyme has been at the forefront of development of the treatment with its drug myozyme, which features in the film.
Harrison Ford said: “I thought the story had something to say about personal courage, initiative, parents’ love and the power to overcome extraordinary circumstances.”
The disease forced Mr Constable to modify his home — including installing a lift — to the tune of £60,000 to cope with his disability.
He said: “I’m 6ft 2in and weigh 17 stones, and I look like I should be really strong, but I have got absolutely no muscle strength.
“Looking back into my childhood, I had the symptoms. I loved sport, but I couldn’t run, I couldn’t kick and I couldn’t throw. I had a really girly throw. I didn’t know what was wrong, people just used to say I was lazy.”
Mr Constable said the disease affected almost everything in his life, including lifting, standing up and even sleeping.
He said: “I haven’t got the strength to keep myself upright if there is a little unexpected dip or crack, I just fall over. Sport is out. I can’t do more than a slow walk — 100 yards or so and I’m starting to get tired.”
Now being treated with the drug myozyme, Mr Constable, a project co-ordinator at RM at Milton Park, said the condition had stabilised.
He said: “The biggest bugbear is I can’t roll over in bed because I don’t have the strength.”
But he said he did not let his disability get him down — “I have always been a glass-half-full person rather than empty. Every day is a blessing.”
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