How can someone with dystonia be a Patient-Active?

If you have dystonia, there is no one way to be a Patient-Active. You decide what is best for you. Being a Patient-Active means that you take specific steps to learn to make informed decisions about your dystonia and its treatment as well as the psychological, emotional, social and spiritual issues that affect your health and well-being.

Research has shown that there are three particularly challenging psychological and emotional stressors that people with chronic disorders such as dystonia face: isolation, loss of control and loss of hope. A meaningful way to reduce these stressors is to participate -- along with loved ones and other people with dystonia -- in support groups, workshops, symposiums, stress management courses and advocacy programs.

This content originally appeared on the Dystonia Medical Research Foundation website at

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.