Living with Genetic Disorder: The Impact of Neurofibromatosis 1

(Hardback)

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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 disfigurements to severe learning disorders, may have serious consequences in every aspect of daily life. NF1 was for many years wrongly diagnozed as the "Elephant Man's Disease". The author 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 grimmest 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. This work examines the factors that affect individuals' 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.

Reviews

"A significant contribution to both academic and lay literature on narratives of the impact of genetic conditions on living with chronic illness and societal perceptions of risk....a tightly integrated and moving ethnography of the experience of people living with Neurofibromatosis 1."-Joseph M. Kaufert, Ph.D. Professor, Department of Community Health Sciences Adjunct Professor, Department of Anthropology The University of Manitoba
"As a practitioner who has had a career-long interest in neurofibromatosis, I experienced several wake-up calls in my reading of this work. I realized how superficial my database was in the awareness of the overwhelming psycho-emotional difficulties involved for people coping with neurofibromatosis. By perusing the incredible wealth of data that Dr. Ablon accumulated in this writing, we are given a potential strategy to help our patients. I believe that this work has enriched our understanding of the challenges for people with neurofibromatosis."-John C. Carey, M.D. Professor of Pediatrics Chief, Division of Medical Genetics The University of Utah
"I highly recommend this book, to geneticists, genetic counselors and researchers working and NF and NF patients; to individuals with NF and their families; to genetic support groups; to health care providers of all disciplines; to special education teachers; and to all who are interested in learning more about how individuals cope with a genetic disorder."-Joan O. Weiss, MSW, LCSW, BCD Founding Director, Alliance of Genetic Support Groups
Ablon's study can be used by health and social service providers, family members, and individuals with NF1 to better understand and cope with its social and psychological impact.-Disability Resources Monthly
The diverse experiences she documents, and the voices she enables us to hear, deepen our our understandings of human desires and strategies. For medical personnel working with persons affected by genertic disorder, the book will prove especially valuable.-Book, Video and Film Reviews
"Ablon's study can be used by health and social service providers, family members, and individuals with NF1 to better understand and cope with its social and psychological impact."-Disability Resources Monthly
"The diverse experiences she documents, and the voices she enables us to hear, deepen our our understandings of human desires and strategies. For medical personnel working with persons affected by genertic disorder, the book will prove especially valuable."-Book, Video and Film Reviews

Author Bio

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).