Perceived stigma in spasmodic torticollis

Little is known about the "stigmatizing" effects of Spasmodic Torticollis-a condition that produces physical disfigurement. This is important in under standing the social dimensions of this disorder. This study examined the pr esence. the dimensions, and the degree of perceived stigma in patients with Spasmodic Torticollis. The study was completed in two stages. In the first stage. ten patients were interviewed to identify the effects of their cond ition on their social interactions. In the second stage, a self-rating meas ure of stigma and questions about the impact of the condition on the patien ts' lives were devised. Perceived stigma was defined as avoidance of others , avoidance by others, self-consciousness. feeling unattractive, feeling ap ologetic, and feeling different from others. The questionnaires were sent t o one hundred patients. The majority of the patients perceived "some" or "s evere" stigma. Stigma was found to affect the patients' social, private, an d working lives. It is suggested that stigma in Spasmodic Torticollis needs to be considered as a parameter relevant to the clinical management of the se patients. (C) 2001 Movement Disorder Society.