September is Dystonia Awareness Month

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.

The mission of the Dystonia Medical Research Foundation (DMRF) is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.

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.

Dystonia Awareness Month falls in the middle of the DMRF’s Dystonia Zoo Day Season (August 18-October 8, 2022). In-person events are scheduled throughout the country: Boston, Bronx/NYC, Cleveland, Los Angeles, Pittsburgh, and Twin Cities. The 3rd Virtual Dystonia Zoo Day will take place on Saturday, October 8th. National Sponsors of the Dystonia Zoo Day program are Allergan, an AbbVie Company; Merz Therapeutics, and Ipsen Biopharmaceuticals.

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The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.