How do I live with dystonia?

Unfortunately there is not yet a cure, however, a number of treatments are available and most people manage to develop successful strategies for daily living. Everyone is different, so in practice this means these strategies will vary from person to person. People need information about all aspects of their condition to effectively manage their condition. 

Click here for our information on managing dystonia.

As with the onset of any long-term medical condition, some people who develop dystonia may experience a mixture of emotions as they begin to understand their diagnosis and its impact.

Most people do manage to develop effective strategies for coping with the challenges that their condition brings. Successful treatments to lessen their symptoms, effective pain control and the acquisition of sensory ‘tricks’ all help to make social situations easier.

Click here for our information on coping with dystonia.

What support does The Dystonia Society offer?

The Dystonia Society is dedicated to providing information and support to everyone affected by dystonia in the UK and to raising awareness of the condition.
The Society is also committed to ensuring that everyone with dystonia has access to the support and care they need.

Our helpline offers an opportunity to discuss your concerns and our advocacy service can offer support if you are having difficulties getting access to the treatment or other support you need.

Our regional support groups run by volunteers provide an opportunity to share experiences and meet others with dystonia. We also run events including Living with Dystonia events and Dystonia Self-Management events.