Social stigmatization in patients with cranial and cervical dystonia

Patients with cranial and cervical dystonia (CCD) suffer from visible involuntary facial, head, and neck movements. Therefore, the social appearance of patients with CCD may be seriously affected and self-perceived stigma can be a major source of disability. The present study investigated enacted social stigmatization of patients with CCD. In a pilot study, a semantic differential scale for assessment of stigma was constructed and validated. The final scale contained eight items representing personality traits to be rated on a seven-point scale (-3 negative extreme to 3 positive extreme). Short video sequences (15 seconds) of patients with various types of CCD and age- and sex-matched healthy controls were presented to a sample of 80 biology students (mean age, 19.8 +/- 2.3 years). Immediately after presentation of each video sequence, the students were asked to perform stigma ratings. Significant differences between CCD patients and controls were found on all eight items (P < 0.001 for each). CCD patients were rated as less accountable for their actions, less likeable, less trustworthy, less attractive, less self-confident, more odd and different, more reserved, and more piteous than controls. CCD patients are subject to serious prejudice and enacted stigmatization. There is a need for informing the public about the nature and symptoms of this disorder and a need to support patients to cope with stigmatization.