Dystonia Advocacy Network - About Dystonia

Action AlertGet Involved

About Dystonia

Dystonia is a neurological movement disorder that causes muscles to contract and spasm involuntarily. It affects men, women, and children. Dystonia can be generalized, affecting all major muscle groups, and resulting in twisting, repetitive movements and abnormal postures. It can also be focal, affecting a specific part of the body such as legs, arms, hands, neck, face, mouth, eyelids, or vocal cords.

Currently, it is estimated that at least 300,000 individuals in North America suffer from dystonia, making it more common than Huntington’s, muscular dystrophy, and ALS. Dystonia may be inherited or caused by specific factors such as trauma, certain medications, and additional medical conditions. For most people with dystonia, the cause remains unknown and there is currently no cure. 

Dystonia is not usually fatal, but it is a chronic disorder producing symptoms that vary in degrees of frequency, intensity, disability, and pain depending on the type of dystonia. The inability to predict or control the movements of the legs, arms, hands, neck, shoulders, face, eyelids, jaw, tongue, and/or vocal cords has a profound impactt on an individual’s life. Dystonia can interfere with nearly all aspects of a person’s life including daily functions such as walking, sitting, sleeping, eating, and talking.

Despite the prevalence of dystonia, awareness and proper diagnosis of this disorder is extremely limited. Many patients report that it took visits to numerous physicians over the course of years to get a correct diagnosis. 

The DAN advocates for all persons affected by dystonia and supports a legislative and policy agenda that meets the needs of the dystonia community. 

If you would like more information about dystonia, please contact our Dystonia Advocacy Network member organizations.