Carole Blackmore has botox injections regularly but it is nothing to do with vanity.

Although often associated with cosmetic surgery, the injections also help to relieve the painful and crippling effects of Mrs Blackmore's dystonia.

The condition forces her muscles to twist and go into spasm and makes it very difficult for her to keep her head still.

Mrs Blackmore, from Heathfield, has had dystonia for more than 20 years and has tried many treatments to help ease the incurable condition, including osteopathy, physiotherapy and even spiritual healing but nothing has really helped.

The botox is working well but she cannot have it too often because she would get immune to it and the injections would no longer work.

Her husband Mike is chairman of the East Sussex branch of the Dystonia Society, a group which is battling to raise awareness of the condition, even among doctors.

The group is also working to raise money to pay for vital research because so little is still known about it.

Mr Blackmore said: "It can affect people in many different ways. Some may find themselves with a twisted neck, while others may end up almost doubled over.

"The problem is the condition can be easily mis-diagnosed. In the past it has been dismissed as psychological but people are gradually becoming more aware of it."

The society has about 3,000 members across the UK and about 140 in Sussex.

There are believed to be about 40,000 sufferers in the UK but the actual figure may be much higher.

Dystonia is the term used to describe a condition dominated by sustained involuntary muscle spasms which can be very painful.

They can affect various parts of the body and cause abnormal movements and postures. It is due to malfunction of the central nervous system.

In primary dystonia, no other functions of the brain are involved and a cause cannot be discovered. But in a small number of cases of secondary dystonia, the cause is usually associated with brain damage.

Focal dystonia affects only one part of the body, such as the eyes or neck; segmental dystonia covers larger regions such as the neck and arms; hemidystonia is when the spasms affect the arm and leg on the same side.

Mrs Blackmore has spasmodic torticollis, a common focal dystonias. Muscle spasms in the neck cause it to twist to one side, forwards or backwards. Eventually it may be held permanently in one position.

Oromandibular is a focal dystonia of the jaw, tongue and mouth. The spasms may cause the mouth to pull open or shut tight, affecting speech and swallowing.

Laryngeal affects the speech muscles of the throat causing strained or forced speech or sufferers may only be able to speak in a whisper.

Writer's cramp is a focal dystonia in which spasms or contraction of the hand and forearm muscles occur when the victim is writing.

Sometimes dystonia starts in childhood, usually in the foot. It then spreads to other parts of the body, including the back, neck and arms.

In the secondary type of dystonia, the symptoms are due to small areas of brain damage, which can be caused by reduced oxygen around the time of birth, injury to the brain or by small strokes or tumours.

In some cases, dystonia can be caused as a side effect of treatment with neuroleptic drugs, which offers a small chance of the condition improving or disappearing spontaneously.

About ten to 15 per cent of patients have experienced temporary or occasionally even permanent remission.

Why this happens, to whom it will happen, or when it will happen cannot yet be predicted but researchers say it is important because it shows the brain may not be permanently damaged.

For many patients, regular injections of botox work well but some types of physiotherapy can also help.

Many other types of treatment have been tried but there is little evidence that acupuncture, homeopathy or diet produce any lasting benefit.

But some patients feel such treatments lessen stress which, in turn, can reduce muscle spasms.

For more information, call the Dystonia Society on 020 7490 5671 or visit www.dystonia.org.uk Mr Blackmore can be contacted on 01323 449258.