How do I manage dystonia?

Unfortunately there is not yet a cure for dystonia. However, a number of treatments are available and most people do manage to develop successful strategies for living with dystonia.
As one of our medical advisers, Dr Marie-Helene Marion explains, this can be best achieved if the patient takes control and becomes the actor of their own condition.
Everyone is different and so what this means in practice will vary from person to person. But, to manage dystonia effectively, patients need information about all aspects of the condition.

Click here for our information on managing dystonia.

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.
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.

Our website has information on dystonia and practical ideas on how to cope with dystonia.

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 treatments 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.