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NINDS Dystonias Information Page

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Condensed from Dystonias Fact Sheet

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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.

NIH Patient Recruitment for Dystonias Clinical Trials

Organizations

Column1 Column2
Dystonia Medical Research Foundation
1 East Wacker Drive
Suite 2810
Chicago, IL   60601-1905
dystonia@dystonia-foundation.org
http://www.dystonia-foundation.org
Tel: 312-755-0198
Fax: 312-803-0138

National Spasmodic Torticollis Association
9920 Talbert Avenue
Fountain Valley, CA   92708
NSTAmail@aol.com
http://www.torticollis.org
Tel: 714-378-9837 800-487-8385

American Speech-Language-Hearing Association (ASHA)
2200 Research Boulevard
Rockville, MD   20850
actioncenter@asha.org
http://www.asha.org
Tel: 800-638-8255
Fax: 301-571-0457

Benign Essential Blepharospasm Research Foundation
637 North 7th Street Suite 102
P.O. Box 12468
Beaumont, TX   77726-2468
bebrf@blepharospasm.org
http://www.blepharospasm.org
Tel: 409-832-0788
Fax: 409-832-0890

Bachmann-Strauss Dystonia & Parkinson Foundation
Fred French Building 551 Fifth Avenue, at 45th Street
Suite 520
New York, NY   10176
info@bsdpf.org
http://www.dystonia-parkinsons.org
Tel: 212-682-9900
Fax: 212-987-0662

Spasmodic Torticollis Dystonia/ST Dystonia
P.O. Box 28
Mukwonago, WI   53149
info@spasmodictorticollis.org
http://www.spasmodictorticollis.org
Tel: 262-560-9534 888-445-4588
Fax: 262-560-9535

American Dystonia Society
17 Suffolk Lane
Princeton Junction, NJ   08550
info@dystoniasociety.org
http://www.dystonia.us/
Tel: 310-237-5478

 
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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last updated July 24, 2014