Frequently asked questions

Who is affected by dystonia?

Dystonia affects men, women and children of all ages.

What are the causes of dystonia?

The causes of dystonia are still not fully understood, but there appears to be a problem in an area of the brain called the basal ganglia, which is involved in controlling movement.

Why have I never heard of dystonia?

Even though dystonia is estimated to be about ten times more common than motor neurone disease, and the third most common neurological disorder, many people have never heard of it.

Is there a cure for dystonia?

Unfortunately, there is not as yet a cure for dystonia. However, most forms of dystonia, can be very successfully managed.

Is dystonia inherited?

An important question for many people is will my child inherit dystonia? This is a difficult question to answer, because there are so many different forms of dystonia.

What forms of treatment are there?

Various treatments are available for dystonia. These will be determined by the type and severity of the dystonia. The main options are: -

Will my dystonia improve?

In many cases, if dystonia develops in childhood, particularly if it starts in the legs, it may spread to other parts of the body, and can become generalised.

What should I do if I think I have dystonia?

If you think you may have dystonia and it has not yet been diagnosed, you should see your doctor and ask to be referred to a neurologist specialising in movement disorders.

How do I live with dystonia?

As with the onset of any long-term medical condition, some people who develop dystonia may go through an initial period of depression, embarrassment and outrage – or relief that there is an explanation for their symptoms.

I have a lot of pain with my dystonia is this usual?

The degree of pain associated with dystonia varies greatly between individuals and may depend upon the type of dystonia you have.