1.

Record Nr.

UNINA9910780795003321

Autore

Wexler Alice <1942->

Titolo

The woman who walked into the sea [[electronic resource] ] : Huntington's and the making of a genetic disease / / Alice Wexler

Pubbl/distr/stampa

New Haven, : Yale University Press, c2008

ISBN

1-282-35177-X

9786612351778

0-300-15177-2

Descrizione fisica

1 online resource (288 p.)

Disciplina

616.8/510097471

Soggetti

Huntington's chorea - New York (State) - History - 19th century

Huntington's chorea - New York (State) - History - 20th century

Lingua di pubblicazione

Inglese

Formato

Materiale a stampa

Livello bibliografico

Monografia

Note generali

Bibliographic Level Mode of Issuance: Monograph

Nota di bibliografia

Includes bibliographical references (p. 189-241) and index.

Nota di contenuto

Frontmatter -- Contents -- Foreword -- Acknowledgments -- Introduction -- 1. The Death of Phebe Hedges -- 2. The Social Course of St. Vitus's Dance -- 3. Inventing Hereditary Chorea -- 4. Chorea and the Clinical Gaze -- 5. The Eyes of Elizabeth B. Muncey, M.D. -- 6. Myths of Origins and Endings -- Abbreviations -- Notes -- Index

Sommario/riassunto

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.