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Living with Genetic Disorder The Impact of Neurofibromatosis 1
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Joan Ablon
ISBN: 0-86569-287-4
ISBN-13: 978-0-86569-287-9
216 pages
Praeger Publishers
Publication: 8/30/1999
List Price: $110.95 (UK Sterling Price: £76.95)
Availability: Print on demand
Media Type: Hardcover
Trim Size: 6 1/8 x 9 1/4
Subjects:
Description: 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.
Table of Contents:
  • Introduction
    Psychosocial Issues in Living with NF1
    Diagnosis and Response of Families of First Generation Adults to Their Condition
    Intergenerational Sharing
    The School Years--The Staging Ground for Stigma
    Getting and Keeping a Job
    The Search for Intimacy
    Marriage and Childbearing
    Gender Response
    Living with Uncertainty
    The Specter of "The Elephant Man"
    Stigma
    NF Support Groups
    Medical Experiences
    Impact
    Conclusion
    Appendixes
    References
    Index
About the Author: JOAN ABLON is Professor Emerita, Medical Anthropology Program, Department of Anthropology, History, and Social Medicine, School of Medicine, University of California, San Francisco. She is the author of Little People in America (Praeger, 1984) and Living with Difference (Praeger, 1988).
LCC Class: 362
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