The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic DiseaseA 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 neighbors called St.Vitus's 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. |
Other editions - View all
The Woman who Walked Into the Sea: Huntington's and the Making of a Genetic ... Alice Wexler No preview available - 2008 |
The Woman who Walked Into the Sea: Huntington's and the Making of a Genetic ... Alice Wexler No preview available - 2010 |
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according affected American appeared Association became become called Cambridge century Charles choreic claim clinical clinicians condition Connecticut considered continued County cultural Davenport David death descendants described developed died disability disorders early East Hampton Edward Elizabeth England especially Eugenics evidence fact father Genetics George Huntington Harbor Hedges helped Hereditary Chorea heredity History Hospital Human Hunting Huntington’s chorea Huntington’s Disease individuals inheritance insanity interest John Journal June King known late later Library lived Long Island malady March marriage married means Medicine mental Michigan Muncey Muncey’s neighbors nervous nineteenth century noted observed Office Osler parents patients persons Phebe physicians PLIC-EHL practice present published Record refer relatives reported Science social Society sometimes sterilization suffered Suffolk suggests symptoms tion town United University Press Vessie Vitus’s dance woman women writing wrote York young