Winner of the 2009 American Medical Writers Association Medical Book Award in the Healthcare Professionals (non-physician) category, given by the American Medical Writers Association.

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.

“This is a remarkable story of ‘St. Vitus` Dance’ (Huntington`s Chorea) from many perspectives: personal, historical and social. Its meticulous history, drawn from archives and personal experience details how this late-onset hereditary disease was viewed not only medically but personally and socially by family members, neighbors and friends of afflicted individuals. This is a must read for anyone interested in the social history and policy surrounding hereditary disease.”—(Garland Allen, Washington University in St. Louis)
“Wexler provides an accessible account of a disease in history. A richness of context gives her study its strength and character.”— (Charles E. Rosenberg, Harvard University)

A szerzőről:
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. She lives in Santa Monica.