Raising awareness of condition (From News Shopper)

Raising awareness of condition

9:32am Wednesday 9th May 2007 in

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Dystonia is a condition which can be both painful and disabling. Reporter WILLIAM DAVIES hears about the life of one man with the disorder ahead of Dystonia Awareness Week.

LIFE changed for Barry Merchant one night in 1967 while driving home in his old Ford Prefect.

His head jerked to the right and he had to drive the remaining half a mile to his home with one hand - while holding his head upright with the other.

He went to his GP and was given medication for the pain.

‘Sometimes it’s very painful and I have to wear a neck brace.’

BARRY MERCHANT

Barry was diagnosed as having dystonia, which causes muscle contractions leading to abnormal movements and postures, 18 months later.

He was prescribed drugs for his condition and eventually became addicted to them.

Barry, of Worbeck Road, Anerley, said: "I took these drugs every day for 17 years and it really held me back.

"It nullified my ability to get on with life.

"Withdrawal was one of the hardest times of my life. Very little was understood about addiction to prescribed drugs at the time."

Barry, who was 20 when he started suffering the condition, suffers from cervical dystonia - also called torticollis - which causes involuntary and sustained spasms of the neck muscles.

He said: "Sometimes it's very painful and I sometimes have to wear a neck brace.

"It can be rather debilitating to hear people, especially colleagues, saying derogatory things behind my back."

He added: "My experience today is very similar to that of many people who have the condition.

"I try to be proactive and explain to people the problems associated with the disorder.

"No-one knew what caused me to suffer dystonia, although it's thought it is usually inherited."

May 6 marks the start of the Dystonia Society's National Awareness Week.

Barry, who works as a street crime warden for Lewisham Council, is hoping this will help educate people about the condition.

The 60-year-old said: "When you ask some people what dystonia is, they think it's an Eastern European country.

"Even some doctors still make the mistake of thinking it is a psychological rather than neurological condition."

He added: "The Dystonia Society is really a lifeline for people like me.

"It offers support and puts people in contact with other people who know what they're going through."

Barry is one of 13 children but believes none of his brothers and sisters have the condition.

He added: "I have no children so it's difficult to know if it is genetic with me."

For more details about the condition, call the Dystonia Society on 0845 458 6322.

LIVING WITH DYSTONIA

DYSTONIA is an incurable neurological movement disorder which causes sustained muscle spasms which can be very painful.

The condition can affect people of all ages and ethnic groups.

Muscle spasms cause abnormal movements and postures.

These include involuntary closing of the eyelids or twisting of the neck.

Dystonia can be difficult to diagnose and many patients remain untreated because their symptoms are unrecognised.

It is thought there are more than 40,000 people with dystonia in the UK.