American Dystonia Society

Dystonia To Be Featured on Mystery Diagnosis

Dystonia is a neurological movement disorder that may affect up to 1.3 million Americans yet it is largely unknown. On February 2, Mystery Diagnosis will feature Dystonia on the Oprah Winfrey Network which is estimated to reach 80 million homes.

Dystonia is a neurological movement disorder that may affect up to 1.3 million Americans yet it is largely unknown to the general public. Dystonia awareness is lagging despite the fact that 2011 marks the 100th anniversary of the first official clinical diagnosis by Dr. Oppenheim in 1911. Research funding for Dystonia is directly connected to public and government awareness of this crippling, debilitating, and often painful disorder. The lack of awareness results in research funding lagging significantly behind other movement disorders and diseases.

On February 2, Mystery Diagnosis will feature Dystonia on the new Oprah Winfrey Network (OWN). OWN is estimated to reach 80 million U.S. homes and presents an excellent opportunity to boost Dystonia awareness on a large scale. It is fortuitous that this episode is broadcast 100 years after the disorder's original mystery diagnosis.

Mystery Diagnosis will present the struggles of diagnosing and recognizing the disorder from the points of view of the patient, loved ones, and the diagnosing physician. The story of this struggle with Dystonia will help educate the public about a disorder that has gone relatively unnoticed. Most of its victims are either housebound due to physical limitations or reclusive due to emotional issues. It is a case of out of sight, out of mind. Seclusion can be due to either an imagined stigma or depression. Dystonia is a lonely disorder as most victims often cope with the pain and disability alone and in silence. This episode will give viewers an insight into this little known but surprisingly prevalent disorder for which there is no cure.

Dystonia has a myriad of causes from genetic to onset after a traumatic brain injury such as those suffered in automobile accidents. Over 21 genetic mutations that cause approximately 9% of the total Dystonia occurences have been identified.

100 years after the first diagnosis has seen no development of medications specifically for any type of Dystonia. Dystonia patients face a trial and error process of prescribing various medications that were developed for anxiety, depression, panic disorder, and Parkinson's Disease. The only effective non-invasive treatment for the muscle spasms is Botulinum Toxin therapy which denervates the muscles temporarily to ease the spasms' frequency and intensity. Botulinum toxin was originally a biowarfare agent developed at Fort Detrick in the 1960s. Some patients have no recourse and elect to undergo Deep Brain Stimulation surgery where electrodes are implanted in the brain to block the signals that cause the involuntary spasms and movement.

The episode will hopefully boost awareness to a level which will lead to an increase in funding for Dystonia research.


Categories: Neurology

Tags: awareness, dystonia, movement disorder, Mystery Dagnosis, neurology, own


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Noel Valero
American Dystonia Society
American Dystonia Society
17 Suffolk Lane
Princeton Junction, NJ 08550