This title 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.

About the Author

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.

Reviews

Verdict: Wexler's thoroughly documented and clearly presented history of Huntington's provides a more focused complement to Edwin Black's study of eugenics in this country, The War Against the Weak. Recommended for academic medical libraries and large public libraries. Background Writing again about her family's history of Huntington's disease, Wexler (Mapping Fate: A Memoir of Family, Risk, and Genetic Disease) broadens her earlier work to place the disease in a historical context in America. She uses the family of Phebe Hedges, based in East Hampton, Long Island, NY, to show the early effects of what was sometimes called St. Vitus's Dance and the "witches' disease" on individuals, their relatives, and their communities. This leads to a look at how the medical and scientific community began to focus on it as a unique entity and how it gradually was seen to fit into the emerging understanding of genetics. Finally, Wexler shows how Huntington's was viewed by and incorporated into the eugenics movement in the United States. From the early 1900s and continuing even into the 1970s, both affected individuals and the scientific community talked about means of "control," which included enforced sterilization.--Dick Maxwell, Porter Adventist Hosp. Lib., Denver Copyright 2008 Reed Business Information.