Living with an illness medics ignored.
It's a little-known illness, but many people suffer from dystonia without even realising. Jane Picken talks to professionals and patients who have to deal with it
Hunched up and in excruciating pain, mother-of-two Val Sharpe had no idea what was causing her frequent ( and often embarrassing ( muscle spasms.
She would sit at work or with friends on a social outing and wait in dread for the next spasm, or for the piercing pain, unable to explain to those around her what was going wrong.
And for more than nine years doctors had no idea either.
Eventually medics realised all it took was a little injection given every six weeks which could give Val relief.
"I was 31 when I started getting a burning sensation in my neck and it gradually got worse and developed into a jerking movement," recalls Val, 53, from Ebchester, County Durham.
"It was very embarrassing, especially as the spasms started happening when I was least expecting them. I tried to control myself, but I couldn't.
"Eventually it started to get so excruciatingly painful and my neck muscles started pulling permanently to the right and my right shoulder hunched up."
Over the course of nine years Val, who has children Greig, 29, and Gemma, 26, as well as two grandchildren saw countless physiotherapists and doctors.
She spent a fortune on alternative treatments and became so depressed about her illness that she was put on anti-depressants. And the diligent mum had been struggling with her demanding jobs as a PA's secretary due to the spasms and pain.
It got to the point where she could barely walk or stand. She rushed to her GP begging for help, who sent her to see a neurologist.
"They finally gave me the diagnosis when I was 40," remembered Val. "The neurologist referred me to Hunters Moor where I got treatment straight away, and a couple of years ago I started to feel a lot better.
"I still get a few jerks and I have to sit a certain way, but things are a lot better. The spasms use up so much energy making a lot of things a struggle ( but I won't let it stop me."
Now Val will visit Prof Mike Barnes at his dystonia clinic at Hunters Moor Hospital in Newcastle for the injections, along with 60 other dystonia patients a week.
Prof Barnes, who holds three dystonia clinics a week at Hunters Moor, said: "We now have a good idea of how many people there are with dystonia out there and botulinum toxin injections are a very effective treatment.
"At the clinics we've had people who've not been diagnosed or have been wrongly diagnosed, often with conditions such as arthritis."
There are at least one in 2,000 people affected by dystonia across the UK and this number is growing, thanks to increased awareness and better diagnosis.
Alongside the professionals, support group ADDER ( Action for Dystonia, Diagnosis, Education and Research ( is working tirelessly to bring together people with the illness as well as spread the word about spotting the condition.
To continue its vital work ADDER needs funding ( a large portion of which will go on its new office in Greenside, Gateshead.
NTo contact ADDER call Dr Butler on 01325 332723 or visit www.dystonia.co.uk
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|Publication:||Evening Chronicle (Newcastle, England)|
|Date:||May 8, 2006|
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