You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond.

As this form of dystonia may be genetic, some people find it helpful to speak to a genetic counsellor, regarding the genetic issues, and what this may mean for you and your family.

Some find the jerking movements may improve when alcohol is taken but this does increase the risk of alcohol abuse and consequent resulting long-term health effects.