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Living with Genetic Disorder Joan Ablon

Living with Genetic Disorder By Joan Ablon

Living with Genetic Disorder by Joan Ablon


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Summary

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.

Living with Genetic Disorder Summary

Living with Genetic Disorder: The Impact of Neurofibromatosis 1 by Joan Ablon

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.

About Joan Ablon

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).

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

Additional information

NPB9780865692879
9780865692879
0865692874
Living with Genetic Disorder: The Impact of Neurofibromatosis 1 by Joan Ablon
New
Hardback
Bloomsbury Publishing Plc
1999-08-30
216
N/A
Book picture is for illustrative purposes only, actual binding, cover or edition may vary.
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