'What Is Dystonia?'

September 19, 2014 9:49 PM

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'What Is Dystonia?'

September is Dystonia Awareness Month. That statement is probably as much of a surprise -- and a mystery -- to the general public as it is for them to learn that as many as 500,000 Americans may be afflicted with this little-known neurological movement disorder. This year is special, though -- Dystonia Awareness Month 2014 sees the culmination of a three-year quest to bring together the various domestic and international dystonia advocacy groups' awareness efforts within the same month, giving the patient community a united voice for awareness. This month has brought hope and inspiration to a patient community that has seen very little reason to hope for decades. They have endured years of living in pain, stigma, and solitude. They've endured suspicions that the source of the disease is psychogenic. Dystonia patients were routinely institutionalized in psychiatric hospitals as recently as the 1980s, and it was 1997 that dystonia was universally recognized as having organic causes. The lack of awareness is especially alarming in government as Congress routinely threatens to cut the NIH budget and with it, the bulk of federal funding for dystonia research. In the past five years, NIH funding has totaled $6 million for the Dystonia Coalition, or $2.40 per patient annually.

"What is dystonia?" and a blank look have been the typical responses to anyone raising awareness. Dystonia is a neurological movement disorder where the brain sends spurious signals to various muscles, resulting in abnormal postures or involuntary movements. Presentations vary with the different bod...

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