'I was so miserable I wanted to die'

Doctors misdiagnosed Viv Pritchard's condition

Jane Elliott BBC News Online health staff

When Viv Pritchard was 12 years old she was sent to a psychiatric ward.

Her doctors diagnosed that the little girl's violent spasms were an outward sign of "Freudian hysteria".

She became so miserable that she attempted suicide and ended back in psychiatric care.

It was not until she was 23 that Mrs Pritchard was correctly diagnosed with the neurological condition dystonia, which causes sustained muscle contractions in various parts of the body.

By this time her symptoms had become so bad that Mrs Pritchard had difficulty even walking a few yards.

I look as if I'm perpetually sneering at everyone

Viv Pritchard

"My torso and neck would bend so far backwards that I could see where I'd been, but not where I was going.

"I used to black out in the toilets at the hospital, which were tiled with ceramic tiles, and knocked my head every time."

But even with a "proper" diagnosis things were not easy.

What is dystonia?

Dystonia is a neurological condition used to describe a number of sustained muscle contractions, often causing twisting and repetitive movements and abnormal postures

It can affect any part of the body and come on at any age

It is estimated that about 40,000 people in the UK have some form of dystonia, although many remain undiagnosed

Mrs Pritchard needed operations for her condition - now she finds speech virtually impossible and is unable to communicate with people - leaving her very much alone.

"Communication is a nightmare.

"It is essential to life - but I can't do it, so I've stopped. Part of my life has gone.

"Not communicating disconcerts people, naturally.

Grimace

"Certain people regard me as a moron to be pitied and ignored.

"The few people who actually dare to say it think I have Cerebral Palsy or Multiple Sclerosis.

"I have a gross, undiagnosed dystonic 'grimace', and this is the worst thing of all.

"I look as if I'm perpetually sneering at everyone."

Mrs Pritchard said the legacy of her condition is that her body has been pumped full of drugs, including the highly addictive drug benzodiazepine, which was prescribed to her by doctors.

She also feels very bitter towards the medical profession, which she feels has ignored her.

Mrs Pritchard hopes that a better awareness and speedier diagnosis of the condition will ensure that others do not go through the horrific and lonely life experiences that she has.

But unfortunately experiences from the Dystonia Society appear to suggest that many, like Mrs Pritchard, are still going undiagnosed.

Eileen Gascoigne, chief executive of the Dystonia Society, explained that many GPs are still ignorant of the distressing condition, which could affect as many as 40,000 people in the UK.

"We are still hearing of cases like this.

"The average GP does not see many cases and so dystonia is not a priority for them to learn about.

"You still hear about people who are being referred for orthopaedic and psychiatric treatment rather than neurological treatment," she said.