Cover image for Blood saga : hemophilia, AIDS, and the survival of a community
Title:
Blood saga : hemophilia, AIDS, and the survival of a community
Author:
Resnik, Susan, 1940-
Personal Author:
Publication Information:
Berkeley : University of California Press, [1999]

©1999
Physical Description:
xvi, 292 pages, 8 unnumbered pages of plates : illustrations ; 24 cm
Language:
English
ISBN:
9780520211957
Format :
Book

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Material Type
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Status
Central Library RC642 .R47 1999 Adult Non-Fiction Central Closed Stacks
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Summary

Summary

For thousands of years boys known as "bleeders" faced an early, painful death from hemophilia. Dubbed "the Royal Disease" because of its identification with Queen Victoria, the world's most renowned carrier, hemophilia is a genetic disease whose sufferers had little recourse until the mid-twentieth century. In the first book to chronicle the emergence and transformation of the hemophilia community, Susan Resnik sets her story within our national political landscape--where the disease is also a social, psychological, and economic experience.

Blood Saga includes many players and domains: men with hemophilia and their families, medical personnel, science researchers, and the author herself, who was Director of Education of the National Hemophilia Foundation in the early 1980s. At that time the "miracle treatment" of freeze-dried pooled plasma blood products enabled men with hemophilia to lead full, normal lives. Then the AIDS virus infiltrated the treatment system and over fifty percent of the hemophilia community became HIV-positive. But rather than collapsing, this community refocused its priorities, extended its reach, and helped shape blood safety policies to prevent further tragedy.

The hemophilia community includes people from every socioeconomic and ethnic group, and Resnik's narrative and use of oral histories never lose touch with those affected by the disease. Her extensive informant interviewing allows much of this social history to be told by participants on all levels: parents, wives, nurses, doctors, government agency directors, health care providers, and many others.

Gene insertion therapy now holds the promise of a cure for hemophilia in the near future. Scientific breakthroughs inevitably become intertwined with the industry and academic medical centers that govern the national health care system. And in that system, says Resnik, costs and safety are sometimes contending issues. She makes clear that the lessons learned in Blood Saga apply to all of us.


Author Notes

Susan Resnik teaches at the University of California, San Diego, Medical School, and was formerly Director of Education of the National Hemophilia Foundation. She lives in Del Mar, California.


Reviews 2

Library Journal Review

This social history of hemophilia in the United States begins in the early 20th century, when most hemophilia patients did not live past their teens. Resnik, a medical school professor (Univ. of California, San Diego) and former director of education for the National Hemophilia Foundation, then discusses the "golden era" when new treatments allowed longer, improved lives and greater independence. This is followed by an in-depth analysis of the devastating events that led to increased activism during the AIDS crisis. Resnik conducted exhaustive research and interviewed numerous key players to provide firsthand accounts of the medical, political, and social events that shaped this community. She concludes with a look at the lessons we have all learned from their experiences. A lengthy glossary, statistical data, and an extensive bibliography are useful additions. This scholarly yet highly readable book is recommended for academic and public libraries, particularly those with larger health sciences collections.ÄTina Neville, Univ. of South Florida at St. Petersburg Lib. (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Choice Review

Hemophilia is currently defined as "a genetic blood clotting disorder" that affects about 15,000-20,000 Americans, with an estimated incidence of one in 7,500 live male births. When Resnik (medicine, Univ. of California, San Diego) first began her research, she found no written history of the US hemophilia community. The basis for most of this book is her doctoral dissertation, which provided a social history of hemophilia in the US from 1948 to 1988, with updated material covering the years 1988-98 added later. Rather than relying on the medical literature or interviewing only physicians who would serve as surrogates, she chose to develop a participatory social history to reflect the views of the community. She approached this task as an applied anthropologist with an ethnographic approach and as an oral historian. Her discussion of the transformation in the nature, composition, size, and organization of the hemophilia community occurs within a chronological narrative across five major periods, the dismal era (before 1948), the years of hope (1948-65), the golden era (1965-82), the AIDS era (1982-88), and approaching the biotech century (1988-98). She identifies the lessons that these developments offer to various groups within society and to society as a whole. This story touches all those connected by bonds of blood. All levels. J. M. Howe; AIDS Information Center, VA Headquarters (DC)


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