Dystonia

Dystonia

What is dystonia?

Dystonia is not a single disease but a syndrome or set of symptoms that cannot be attributed to a single cause. Dystonia is a neurological disorder that is characterised by abnormal muscle rigidity, causing painful muscle spasms, unusually fixed postures, or strange movement patterns. It is often not recognised when the person first presents to their doctor. Diagnosis may not be straightforward.

How is it diagnosed?

Doctors diagnose dystonia based on the information from the history, physical and neurological examination. At present, there is no specific blood test, x-ray or brain scan to diagnose dystonia.

Dystonia may occur in a generalised (affecting all or most of the body) or focal form (affecting one specific part of the body) and it may result from a hereditary condition or as a result of a brain injury. Dystonia is not fatal, but depending on the form, it can be extremely debilitating.

Some of the most common forms of dystonia are:

A person can also suffer from generalised dystonia where the condition has progressed to many parts of the body – this type of dystonia most commonly affects children and young people, causing contorted limbs, which make normal movement impossible.

Is there any treatment available?

Medication may alleviate the symptoms of pain, spasm and abnormal posturing and function. The range of treatments available may have differing mechanisms of action and benefits and side effects may be difficult to predict. At present there is no cure for dystonia.

One drug may work for one patient and not for another and sometimes the benefit is only short-lived. Therefore, it is important that treatment is tailored for the individual.

Dystonia, like many other chronic neurological disorders, was recognised as a distinct entity only relatively recently. For decades psychiatrists and neurologists argued over where to place dystonia in the 'no man’s land' between disciplines. However, 20 years ago, Dr C. David Marsden and his colleagues published a series of papers which showed that most patients with dystonia are suffering from an organic disorder. Research on dystonia is ongoing.

Dystonia Ireland is the national support group for sufferers of dystonia. The organisation was established in 1992 by Maria Hickey and Dr Michael Hutchinson. Dystonia Ireland aims to support, educate society, and raise awareness of the condition.

For further information, please contact:

Maria Hickey, Dystonia Ireland, 33 Larkfield Grove, Harold’s Cross, Dublin 6W
Tel: 01-4922514, Fax 01-4922565,
dystonia@gofree.indigo.ie

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