An estimated 250,000 people in the United States have dystonia, a chronic movement disorder affecting the brain and nervous system. It is the third most common movement disorder after essential tremor and Parkinson disease. Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest that 70% of patients are misdiagnosed prior to a dystonia diagnosis.
“Individuals often suffer years without proper treatment, and this can have devastating effects on employment, schooling, and overall quality of life,” says Art Kessler, President of the Dystonia Medical Research Foundation (DMRF). “Delayed diagnosis also prevents people from having access to the information they need to make informed treatment decisions and peer support from others who understand the challenges of living with dystonia.”
Common dystonia symptoms include abnormal head and neck movements, excessive blinking, a breathy or strangled-sounding voice, hand cramps, and/or a twisted foot. Dystonia can affect a specific part of the body or many muscles all over the body. Dystonia occurs when the nervous system is overcome by chaotic signals, causing muscles to contract involuntarily. Causes include genetics, traumatic brain injury, drug reaction, and numerous neurological or metabolic diseases.
Dystonia affects adults and children. Because dystonia is not better known, symptoms are often mistaken for psychiatric disturbance, substance abuse, or poor social skills. There is currently no cure but treatment options are available. Prompt diagnosis is critical because research suggests that treatment may be more successful when symptoms are treated early.
The Dystonia Medical Research Foundation (DMRF) is a non-profit organization that supports dystonia research, promotes greater awareness, and provides support resources to affected individuals and families. Throughout September, the DMRF is mobilizing volunteers across the country to promote awareness in local communities and social media. Information is available at www.dystonia-foundation.org/dystonia-moves-me
Dystonia events are scheduled throughout the country: Atlanta, Bronx/NYC, Cleveland, Chicago, Cincinnati, Denver, Detroit, Indianapolis, Los Angeles, Omaha, Pittsburgh, Philadelphia, Phoenix, Providence, Toledo, and St. Louis.
For information about dystonia, treatments, support resources, and locating medical specialists, the Dystonia Medical Research Foundation (DMRF) can be reached at www.dystonia-foundation.org and 800-377-DYST (3978).