What are Dystonias?

The dystonias are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements, which are involuntary and sometimes painful, may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Early symptoms may include deterioration in handwriting, foot cramps, or a dragging foot after running or walking some distance. Other possible symptoms are tremor and voice or speech difficulties. About half the cases of dystonia have no connection to disease or injury and are called primary or idiopathic dystonia. Of the primary dystonias, many cases appear to be inherited. Dystonias can also be symptoms of other diseases, some of which may be hereditary. In some individuals, symptoms of a dystonia appear in childhood. For other individuals, the symptoms emerge in late adolescence or early adulthood.

Is there any treatment?

No one treatment has been found to be universally effective. Instead, doctors use a variety of therapies (medications, surgery, and other treatments such as physical therapy, splinting, stress management, and biofeedback) aimed at reducing or eliminating muscle spasms and pain. Since response to drugs varies among individuals and even in the same person over time, the most effective therapy is often individualized.

What is the prognosis?

The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue. Dystonias often progress through various stages. Initially, dystonic movements are intermittent and appear only during voluntary movements or stress. Later, individuals may show dystonic postures and movements while walking and ultimately even while they are relaxed. Dystonic motions may lead to permanent physical deformities by causing tendons to shorten.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to dystonia in its laboratories at the National Institutes of Health (NIH) and also supports additional dystonia research through grants to major research institutions across the country. Scientists at other NIH Institutes (National institute on Deafness and Other Communications Disorders, National Eye Institute, and Eunice Kennnedy Shriver National Institute on Child Health and Human Development) also support research that may benefit individuals with dystonia. Investigators believe that the dystonias result from an abnormality in an area of the brain called the basal ganglia, where some of the messages that initiate muscle contractions are processed. Scientists at the NINDS laboratories have conducted detailed investigations of the pattern of muscle activity in persons with dystonias. Studies using EEG analysis and neuroimaging are probing brain activity. The search for the gene or genes responsible for some forms of dominantly inherited dystonias continues.

Organizations

Dystonia Medical Research Foundation

1 East Wacker Drive, Suite 2810
Chicago, IL 60601-1905
Phone: 312.755.0198
Fax: 312.803.0138
Email: dystonia@dystonia-foundation.org
Website: www.dystonia-foundation.org

National Spasmodic Torticollis Association

9920 Talbert Avenue
Fountain Valley, CA 92708
Phone: 714.378.9837
Toll-free: 800.487.8385
Email: NSTAmail@aol.com
Website: www.torticollis.org

WE MOVE (Worldwide Education & Awareness for Movement Disorders)

5731 Mosholu Avenue
Bronx, NY 10024
Phone: 347.843.6132
Fax: 718.601.5112
Email: wemove@wemove.org
Website: www.wemove.org

American Speech-Language-Hearing Association (ASHA)

2200 Research Boulevard
Rockville, MD 20850
Toll-free: 800.638.8255
Fax: 301.571.0457
Email: actioncenter@asha.org
Website: www.asha.org

Benign Essential Blepharospasm Research Foundation

637 North 7th Street, Suite 102
P.O. Box 12468
Beaumont, TX 77726-2468
Phone: 409.832.0788
Fax: 409.832.0890
Email: bebrf@blepharospasm.org
Website: www.blepharospasm.org

Bachmann-Strauss Dystonia & Parkinson Foundation

Fred French Building
551 5th Avenue, Suite 520
New York, NY 10176
Phone: 212.682.9900
Fax: 212.987.0662
Email: info@bsdpf.org
Website: www.dystonia-parkinsons.org

Spasmodic Torticollis Dystonia/ST Dystonia

P.O. Box 28
Mukwonago, WI 53149
Phone: 262.560.9534
Toll-free: 888.445.4588
Fax: 262.560.9535
Email: info@spasmodictorticollis.org
Website: www.spasmodictorticollis.org

American Dystonia Society

17 Suffolk Lane
Princeton Junction, NJ 08550
Phone: 310.237.5478
Email: info@dystoniasociety.org
Website: www.dystonia.us

Source: National Institutes of Health; National Institute of Neurological Disorders and Stroke

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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 11/20/2012...#6006