The only national charity providing support, advocacy and information for anyone affected by the neurological movement condition known as 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 here, 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.
Information on physiotherapy, physical exercise and diet.
Information on benefits.
Information on work, family, friends, home and coping socially.
Coming to terms with a diagnosis of dystonia is a challenge for everyone. There will inevitably be a process of adjustment which for many will be distressing.
Information on communicating with healthcare professionals, managing pain and treatment options.