The Woman Who Walked into the Sea : Huntington's and the Making of a Genetic Disease
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Description
This work presents a groundbreaking medical and social history of a devastating hereditary neurological disorder once demonized as 'the witchcraft disease'. When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbours called St. Vitus' dance. Doctors later spoke of Huntington's chorea, and today it is known as Huntington's disease. This book is the first history of Huntington's in America. Starting with the life of Phebe Hedges, Alice Wexler uses Huntington's as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians.She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to 'belong to the disease'; the emergence of Huntington's chorea as a clinical entity; and, the early-twentieth-century transformation of this disorder into a cautionary eugenics tale.
In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.
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In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.
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Product details
- Hardback | 272 pages
- 156 x 234 x 27.94mm | 521.63g
- 30 Sep 2008
- Yale University Press
- New Haven, CT, United States
- English
- Illustrations, facsims., geneal. tables, ports.
- 0300105029
- 9780300105025
- 919,388
Review quote
Alice Wexler has once again accomplished the near impossible by writing a fascinating academic page-turner. Filled with truth and brilliance throughout, The Woman Who Walked into the Sea is an amazing book that leaves the reader not only better informed, but materially enriched, moved by the experience, and not wanting it to end. Carole Browner, University of California, Los Angeles--Carole Browner"
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About Alice Wexler
Alice Wexler is a research scholar at the UCLA Center for the Study of Women and the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research.
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