Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways. These are listed below.

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Dystonia is a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Sometimes the symptoms are accompanied by dystonic tremor.

Unfortunately there is not yet a cure. However, in the vast majority of cases, dystonia does not shorten a person’s life span. Dystonia is thought to originate in part of the brain called the basal ganglia.

Treatments are available and most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks to help with social situations. Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.

Dystonia which starts in adult life usually remains focal to one part of the body. If dystonia starts in childhood, it tends to spread across multiple parts of the body.

 

Managing dystonia

Coping with dystonia can be done most successfully if the person affected by dystonia (and, where appropriate, their carers) actively manages the condition. Everyone is different and so what this means in practice will vary from person to person. To manage dystonia effectively, people affected by dystonia need information about all aspects of the condition. This can enable them to take control and become the actor of their condition.