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A new Valley support group is forming for individuals battling dystonia, a rare movement disorder that often is painful.

About three people in 10,000 (or an estimated 83,000 people in the United States) are afflicted with spasmodic torticollis, the most common form of dystonia. About 300,000 people in North America have dystonia.

The local support group is free and meets quarterly at the Women's Pavilion at Encino-Tarzana Regional Medical Center, 18321 Clark St. in Tarzana. For more information, call Faye Goldstein in Encino at 344-9996.

For more information about dystonia, contact the Chicago-based Dystonia Medical Research Foundation at (800) 377-3978 or visit their Web site at http// The National Spasmodic Torticollis Association in Wisconsin can be reached at (800) 487-8385.

The association and Mark Lew, an assistant professor of neurology at the University of Southern California's department of neurology, division of movement disorders, provided the following information.

What is dystonia?

It's a neurological disorder that includes involuntary, sustained muscle contractions in one or more body parts. There are different kinds of dystonia, including focal dystonia, which is confined to one body part. One form of focal dystonia is spasmodic torticollis (also known as cervical dystonia), which involves the neck region. Although dystonia rarely is life-threatening, it can be severely disabling.

What are some common symptoms?

Prominent, abnormal body movements that can be jerky or sustained. With spasmodic torticollis, for example, there's a turning or tilting of the head or neck. And unlike other kinds of dystonia, spasmodic torticollis can be very painful.

What causes dystonia?

Although research continues, dystonia can be traced to chemicals, likely coming from the brain, that are connected with the body's coordination and movement. Some dystonia can be traced through family medical histories, but the genetics behind focal dystonia aren't yet understood.

Who does dystonia seem to target?

There's no predisposition for gender. However, children are much more likely to develop general dystonia, while adults are more likely to have focal dystonia.

What treatments or cures are available?

Although there's no cure, treatments are available, including medications. And injections of Botulinum toxin in muscles can temporarily paralyze the injected muscle.

Why is dystonia often misdiagnosed, or undetected altogether?

It's an unusual movement disorder. Also, because dystonia's symptoms worsen with stress and anxiety, and diminish with relaxation, many dystonia sufferers often get a pat on the back and advice to relax. Until about 25 years ago, spasmodic torticollis often was mistaken for a psychiatric disorder.
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Title Annotation:L.A. LIFE
Publication:Daily News (Los Angeles, CA)
Date:Jan 27, 1997

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