Dystonia. The number of times that I have had to describe the meaning of this term to people who have never heard of it before is immeasurable. And for what? So that these forgetful, though kind, people can simply forget in a week or an hour and ask again the next time it is brought up. I for one am outraged by the fact that so few people know about this disorder. But even more infuriating is the fact that so few doctors know anything about this disorder.

To begin, “dystonia” is defined as “a syndrome of sustained muscle contractions, frequently causing twisting and repetitive movements, or abnormal postures.” (Dystonia Medical Research Foundation) The many different forms of dystonia include Early-Onset Generalized, Paroxysmal Dystonia, X-linked Dystonia, Myoclonic Dystonia, Rapid-Onset Dystonia, and Secondary Dytsonia, but the specific form that I have, and can therefore describe in the most detail, is known as Dopa-responsive Dystonia.

This form of dystonia is called Dopa-responsive because when dopamine is added to the body in the form of a pill (Sinemet, or carbidopa/levodopa), the symptoms of dystonia are softened or appear to disappear entirely during the effective time of the pill. Sinemet is thought to cause such phenomenal improvements in the behavior of the dystonia patient because of the theory that dystonia may be related to an imbalance of dopamine in the brain, or more specifically, the basal ganglia. The common symptoms of Dopa-responsive dystonia include difficulties regarding walking and trouble with balance, and at times may even include some tension and tremors in the hands.