The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease

The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease

by Alice Wexler
     
 

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ISBN-10: 0300105029

ISBN-13: 9780300105025

Pub. Date: 09/22/2008

Publisher: Yale University Press

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

Overview

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.

 

Product Details

ISBN-13:
9780300105025
Publisher:
Yale University Press
Publication date:
09/22/2008
Pages:
288
Product dimensions:
6.40(w) x 9.30(h) x 1.10(d)

Table of Contents

Foreword Nancy S. Wexler ix

Acknowledgments xiii

Introduction xvii

Family/Community

1 The Death of Phebe Hedges 3

2 The Social Course of St. Virus's Dance 22

Community/Medicine

3 Inventing Hereditary Chorea 57

4 Chorea and the Clinical Gaze 94

Medicine/Eugenics/Memory

5 The Eyes of Elizabeth B. Muncey, M.D. 125

6 Myths of Origins and Endings 151

List of Abbreviations 187

Notes 189

Index 243

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