A description of the social, educational, and economic impact of
living with a neurological genetic disorder, neurofibromatosis 1.
The many unpredictable and potentially stigmatizing possible
symptoms of NF1, which range from physical disfigurement to severe
learning disorders, may have serious consequences in every aspect
of daily life. NF1 was for many years wrongly diagnosed as the
Elephant Man's Disease.
Ablon examines the psychosocial costs of this misdiagnosis and
the ways in which stage, screen, and television parlayed The
Elephant Man into the personification of the grimmist extreme of
ugliness. This portrayal engendered fear and anxiety for affected
persons and their families and also had an impact on the scientific
and medical communities. Ablon analyzes the factors that affect
individual positive adaptation to NF1 and the demands of American
society, and offers suggestions for families, support systems, and
health care providers for treatment of affected individuals.
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