What does it mean for a person with dystonia to be a Patient-Active?

A person who sees him or herself as a "Patient-Active" is someone who considers himself part of the fight for a meaningful life in spite of having a disorder, such as dystonia.

Being a "Patient-Active" is about feeling and acting empowered. Patient-Active is not just a descriptive term about how you choose to act as a person with dystonia. A Patient-Active is an actual person who opts for being more than a dystonia patient. It is your active participation in the choices you and your healthcare team make about treatment that can improve your quality of life and perhaps enhance the possibility of improvement. Choosing to be a Patient-Active is not one monumental decision, but rather a series of small incremental choices that help you regain a sense of control over your treatment and in your life in general.

This content originally appeared on the Dystonia Medical Research Foundation website at www.dystonia-foundation.org.

Continue Learning about Dystonia


When your muscles contract involuntarily, the condition is called dystonia. Dystonia causes a twisting or clenching of whatever body part is affected. For example, when you have a stroke, the affected arm and hand may be clenched ...

and held in a strange position. Dystonia can be very mild or very severe. It can make your life very difficult and this can lead to frustration, depression or anxiety. See your doctor to treat your symptoms and talk over your frustrations.

Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.