Members of a support group for people who suffer from a neurological disorder are raising awareness of the condition as figures reveal it is much more prevalent than previously thought.

As part of an Awareness Week from May 8 to 16, The Dystonia Society is publicising research which reveal 70,000 people in the United Kingdom have the movement disorder known as dystonia – 75 per cent more than previously thought.

Dystonia is a neurological movement disorder characterised by muscle spasms. These can cause twisting, repetitive movements or abnormal postures, such as involuntary closing of the eyelids, twisting of the neck or loss of speech.

It can affect just one part of the body or several different areas and affects people of all ages. There is no cure but it can be successfully managed in many cases.

Carol Garforth, 62, of Cleckheaton, is secretary of the West Yorkshire Dystonia Society Support Group, and was diagnosed with dystonia 20 years ago. In her case if affects her voice, making talking difficult.

“It is totally isolating,” she said. “Talking is a strain and such hard work it leaves me completely exhausted so I often don’t bother speaking at all.”

It took three years for Carol to get a diagnosis, with some health professionals suggesting the problem was in her mind. “A lot of doctors don’t understand it and it is misdiagnosed,” she said.

Her breakthrough came when she heard a radio interview with someone with dystonia who sounded just like herself.

Once diagnosed she began having botox injections into her larynx. “It paralyses the muscle and then I could speak normally for a few weeks,” she said.

However, a couple of years ago she developed a rare immunity to botox, so the treatment no longer works.

Despite her trouble talking she works with a support group. On Saturday the group took to the streets of Cleckheaton, handing out leaflets and raising £70.

Carol said: “Because it is a little known condition, there are probably many people in our area with dystonia who haven’t had it properly diagnosed.”

The next meeting if the West Yorkshire Support Group is on Monday, June 28, at the Nerve Centre, Standard House, Half Moon Street, Huddersfield, HD1 2JF, from 2pm to 4pm.

For information contact (01274) 583606 or e-mail: Dencol31@aol.com or cgarforth@btinternet.com The Dystonia Society runs a helpline service on 0845 458 6322 or visit dystonia.org.uk.