Contact the American Academy of Neurology
Phone: (800) 879-1960
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. Dystonia can occur at any age, but is often described as either early, or childhood, onset versus adult onset.
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.
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.
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.
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Dystonia Medical Research Foundation
Non-profit medical research foundation that funds research, advances awareness, and provides education and support on dystonia, a movement disorder.
1 East Wacker Drive
Chicago, IL 60601-1905
National Spasmodic Torticollis Association
Non-profit organization formed to give information and support to people with spasmodic torticollis (ST), also known as cervical dystonia. Offers an outreach program designed to increase awareness of the disorder. Chapters are located nationwide.
9920 Talbert Avenue
Fountain Valley, CA 92708
American Speech-Language-Hearing Association
Professional, scientific, and credentialing association for audiologists, speech-language pathologists, and speech, language, and hearing scientists. Offers public information about a wide range of speech, language, and hearing disabilities in both children and adults.
2200 Research Boulevard
Rockville, MD 20850
Benign Essential Blepharospasm Research Foundation
Works to undertake, promote, develop, and carry on the search for the cause and a cure for benign essential blepharospasm and other related disorders and infirmities of the facial musculature.
637 North 7th Street
P.O. Box 12468
Beaumont, TX 77726-2468
Bachmann-Strauss Dystonia & Parkinson Foundation
Non-profit foundation that supports patients, family members, researchers, clinicians, and volunteers working in partnership to find better medical treatments and a cure for dystonia and Parkinson's disease.
P.O. Box 38016
Albany, NY 12203
Spasmodic Torticollis Dystonia/ST Dystonia
Non-profit support resource for individuals with spasmodic Torticollis. Offers a magazine and sponsors symposia.
P.O. Box 28
Mukwonago, WI 53149
American Dystonia Society
American Dystonia Society (ADS) is dedicated to advancing Dystonia research, promoting patient advocacy and increasing public awareness of this debilitating disease. American Dystonia Society's top priority is to maximize delivery of donations to fund Dystonia Research to realize a cure and develop more effective diagnosis/medication/treatment protocols for Dystonia. ADS is dedicated to improving the quality of life for a person living with Dystonia.
17 Suffolk Lane
Princeton Junction, NJ 08550