But then she started to get spasms during normal speech that would suddenly cut off her words.

"At the time it felt like a punch in the ribcage, so I did not immediately associate it with my throat. I managed at work for another year by raising my voice pitch to get my words out fluently," recalls Vivien.

She saw various specialists, but nobody seemed to know what the problem was.

It was only when her daughter was talking to a friend that she said it sounded like Laryngeal Dystonia (often referred to as Spasmodic Dysphonia or SD) as a friend of hers had it.

"As soon as I went on to the website and heard an example of speech with SD, I knew that was it, it sounded just like me."

After visiting a number of neurologists who gave her conflicting diagnoses, it was eventually confirmed that Vivien did have SD, and
she was given an initial dose of botox serum.

"The response was almost immediate and although I had been given a reasonable dose, it did not last long, but it did at least confirm the diagnosis."

Botox paralyses the muscles in the throat and, therefore, reduces the spasms.

Throughout this time, specialists had been paid for by Vivien's husband's private health insurance, but as soon as the condition was diagnosed as incurable, they refused to authorise more treatment.

Vivien turned to her primary care trust to ask if they would fund the vital treatment she needed, and after an initial delay and a visit to show the trust, first hand, what she was living with, she was given the go-ahead for the treatment.

"During the waiting, my voice just got tighter and tighter, and knowing that the botox could help, but not being able to have it was very depressing for me," she said.

She decided to join the Dystonia Society, which put her in contact with another sufferer. "It was the first time I had met anybody else with the same problem and it immediately made me feel a little better about myself," says Vivien, from Boston Spa.

"I have since met another lady with SD, but both of them seem to have a different variation of symptoms to me.

"I have noticed that although their voice pattern is interrupted when they speak, they do not appear to have any effort in speaking.

"When I do not have the injections, my voice gets ever more strangled until I can hardly speak at all. And my voice gets very monotone as I lose all intonation and can sound abrupt and even aggressive just with the effort to speak."

Vivien has been having botox injections for a year. "The last treatment was the best, with the voice lasting for a good two months before deteriorating. So good, in fact, that I could nearly forget that I had SD.

"Even though I find the treatment process traumatic, I could not do without the injections; the difference it makes to my life is immeasurable.

"I live in dread of the funding being cut off and being sentenced to a life with very little communication."


DYSTONIA: THE FACTS

Dystonia is a neurological movement disorder characterised by involuntary and sustained muscle spasms which can be very painful.

The condition affects men and women of all ages and ethnic groups.

Cases of adult dystonia tend to remain located only in one specific part of the body. Cervical dystonia (affecting the neck), Blepharospasm (affecting the eyelids) and Laryngeal dystonia (affecting the speech muscles) are the most common types of adult dystonia. Writers' cramp, musicians' cramp and even golfers' 'YIPS' are also forms of focal dystonia.

There is still considerable ignorance and misunderstanding about dystonia. Until very recently, it was common for patients to be referred at first to a psychiatrist instead of a neurologist.

There is no cure although treatments, including Botulinum Toxin (botox) injections and other drug treatments, can alleviate the condition. In certain cases, surgery is the only option.

Pain caused by the muscle spasms can take a heavy toll on an individual's social life
and, in many cases, makes it difficult to remain in paid employment.

Dystonia awareness week runs until May 11. For more information on different types of dystonia, contact the Dystonia Society on 0845 458 6211, info@dystonia.org.uk or visit www.dystonia.org.uk

For more on Laryngeal dystonia, visit www.dysphonia.org