'The Elephant Man' as 'self' and 'other': the psycho-social costs of a misdiagnosis.

'The Elephant Man's Disease' acquired enormous notoriety through the portrayals of the life of Joseph Merrick, 'The Elephant Man', on American stage, screen and television. These portrayals, inspired by Ashley Montagu's book, The Elephant Man (1971) parleyed the designation of Merrick's condition into a household phrase, a metaphor for the grimmest extreme of ugliness. This paper explores the impact of 'The Elephant Man' as the chief referent and role model for persons who believed they shared the condition of neurofibromatosis 1, a neurological genetic disorder, which was erroneously believed at the time his story was popularized to have affected Joseph Merrick. Data were gathered through interviews with sixty affected individuals and families about their responses to the media representations of 'The Elephant Man'. Informants were recruited from three NF Support Groups and two urban hospital caseloads in Northern California.