Living with Genetic Disorder The Impact of Neurofibromatosis 1

Subjects:

• Health/Medicine » Public Health
• Sociology » Physical/Mental Disabilities

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

• Endorsement From Joan O. Weiss, MSW, LCSW, BCD
  Founding Director, Alliance of Genetic Support Groups: 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.
• Endorsement From John C. Carey, M.D.
  Professor of Pediatrics
  Chief, Division of Medical Genetics
  The University of Utah: 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.
• Endorsement From Joseph M. Kaufert, Ph.D.
  Professor, Department of Community Health Sciences
  Adjunct Professor, Department of Anthropology
  The University of Manitoba: 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.

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