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Dystonias
Dystonias

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 also can 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, a part of the National Institutes of Health, conducts research related to dystonia and also supports additional dystonia research through grants to major medical institutions across the country. 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.

Additional Resources

Dystonia Medical Research Foundation
1 East Wacker Drive, Suite 2430
Chicago, IL 60601-1905
(312) 755-0198
Fax: (312) 803-0138
Internet: www.dystonia-foundation.org
E-mail: dystonia@dystonia-foundation.org

National Spasmodic Torticollis Association
9920 Talbert Ave., Suite 233
Fountain Valley, CA 92708
(714) 378-7837 or 1-800-HURTFUL (1-800-487-8385)
Fax: (714) 378-7830
Internet: www.torticollis.org
E-mail: NSTAmail@aol.com

Worldwide Education & Awareness for Movement Disorders (WE MOVE)
204 West 84th St.
New York, NY 10024
1-800-437-MOV2 (1-800-437-6682) or (212) 875-8312
Fax: (212) 875-8389
Internet: www.wemove.org
E-mail: wemove@wemove.org

Bachmann-Strauss Dystonia & Parkinson Foundation
Mt. Sinai Medical Center
One Gustave L. Levy Place
P.O. Box 1490
New York, NY 10029
(212) 241-5614
Fax: (212) 987-0662
Internet: www.dystonia-parkinsons.org
E-mail: Bachmann.Strauss@mssm.edu

American Speech-Language Hearing Association (ASHA)
10801 Rockville Pike
Rockville, MD 20852-3279
(301) 897-5700 or 1-800-638-8255
Fax: (301) 571-0457
Internet: www.asha.org
E-mail: actioncenter@asha.org

Benign Essential Blepharospasm Research Foundation
637 North 7th St., Suite 102
P.O. Box 12468
Beaumont, TX 77726-2468
(409) 832-0788
Fax: (409) 832-0890
Internet: www.blepharospasm.org
E-mail: bebrf@sbcglobal.net

Spasmodic Torticollis Dystonia/ST Dystonia
P.O. Box 28
Mukwonago, WI 53149
1-888-445-4588 or (262) 560-9534
Fax: 262-560-9535
Internet: www.spasmodictorticollis.org
E-mail: info@spasmodictorticollis.org

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

Updated: February 14, 2007


 

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