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

Description: Living with Genetic Disorder by Joan Ablon A description of the social, educational, and economic impact of living with a neurological genetic disorder, neurofibromatosis. FORMAT Hardcover LANGUAGE English CONDITION Brand New Publisher 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 Mans 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. Author Biography 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 IntroductionPsychosocial Issues in Living with NF1Diagnosis and Response of Families of First Generation Adults to Their ConditionIntergenerational SharingThe School Years--The Staging Ground for StigmaGetting and Keeping a JobThe Search for IntimacyMarriage and ChildbearingGender ResponseLiving with UncertaintyThe Specter of "The Elephant Man"StigmaNF Support GroupsMedical ExperiencesImpactConclusionAppendixesReferencesIndex Review "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?Ablons 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"Ablons 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 Promotional A chronicle of the life experiences of adults with neurofibromatosis 1, a neurological genetic condition for many years misdiagnosed as The Elephant Mans Disease. Long 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 Mans 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. Review Quote "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 Promotional "Headline" A chronicle of the life experiences of adults with neurofibromatosis 1, a neurological genetic condition for many years misdiagnosed as The Elephant Mans Disease. Details ISBN0865692874 Author Joan Ablon Short Title LIVING W/GENETIC DISORDER Pages 216 Language English ISBN-10 0865692874 ISBN-13 9780865692879 Media Book Format Hardcover Year 1999 Subtitle The Impact of Neurofibromatosis 1 Country of Publication United States Illustrations appendices, references, index Edition 1st Place of Publication Westport Affiliation Professor Emerita, University of California, San Francisco Imprint Praeger Publishers Inc UK Release Date 1999-08-30 NZ Release Date 1999-08-30 US Release Date 1999-08-30 Audience Age 7-17 Publisher Bloomsbury Publishing Plc Publication Date 1999-08-30 DEWEY 362.19699383 Audience Undergraduate AU Release Date 1999-08-29 We've got this At The Nile, if you're looking for it, we've got it. With fast shipping, low prices, friendly service and well over a million items - you're bound to find what you want, at a price you'll love! TheNile_Item_ID:9624533;

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