What is dystonia?

Dystonia is a condition in which there is involuntary contraction of certain muscles. This produces movements or postures which appear abnormal or excessive and which are beyond the control of the affected individual. These muscle contractions can give rise to discomfort and pain and can make normal movements difficult or impossible.

Who is at risk of developing dystonia?

Dystonia is uncommon and affects women slightly more often than men. Onset can be in childhood or adulthood. The prevelance of dystonia in this country has not been formally studied but it afffects approximately 30 to 50 in every 100,000 people worldwide. Dystonia can arise as a manifestation of another disease, as a side effect of some medication or, most commonly, in the absence of any other abnormality where it is known as primary dystonia. Most cases of primary dystonia are probably inherited although most people are unaware of any other affected relative.

What symptoms does dystonia cause?

Inherited forms of dystonia that start in childhood can sometimes spread over time to involve many muscles throughout the body. The most common form however starts in adulthood and typically affects only one body part and usually will not spread. This form of dystonia most often involves the muscles of the neck to cause twisting movements (sometimes known as torticollis) but any muscle can be affected. Dystonia of the eye muscles can cause them to intermittantly close tightly shut (blepharospasm) and in the hand muscles it can cause cramping or spasm, commonly known as writers' cramp when occurring during writing.

Is there any form of treatment?

In most cases dystonia is a lifelong condition and no cure is currently available. Mild forms of dystonia may require no treatment at all and many people will not even be aware that they have the condition. Oral medication can sometimes helpful. The most effective treatment available for patients who are suitable is botulinum toxin. This is injected into affected muscles after assessment by a doctor experienced in treating dystonia. Botulinum toxin can greatly improve symptoms but is not a cure and if effective needs to be repeated every three to six months.

What service is available for people with dystonia in St. Vincent's Hospital?

In St. Vincent’s Hospital we have a specialised dystonia clinic which runs one day each week. Dystonia has been one of our major interests in the neurology department for many years and we see patients from all over the country. Anybody concerned that they or a family member may have dystonia can be referred to our clinic if their general practitioner feels this is appropiate.

The Department of Neurology in St. Vincent’s Hospital has an ongoing interest in dystonia research. All of our research has been financially supported by Dystonia Ireland, a voluntary organisation which has been invaluable in supporting our work and patients with dystonia in Ireland. We are particularly interested in meeting families where one or more individuals have dystonia to help us learn more about the genetic cause of some forms of the condition. We would be delighted to hear from anyone interested in taking part in our research programme. Contact details can be left by phoning (01) 2214179.

Useful Links:

Dystonia Ireland
33 Larkfield Grove
Harold's Cross
Dublin 6W
work Tel: 00 353 (01) 4922514
work fax Fax: 00 353 (01) 4922565