A01=Susan Resnik
aids
Author_Susan Resnik
bleeders
blood diseases
blood safety policies
Category=MBX
Category=MJC
Category=NHTB
economic experience
eq_bestseller
eq_history
eq_isMigrated=1
eq_isMigrated=2
eq_nobargain
eq_non-fiction
ethnicities
genetic disease
hemophilia
hemophilia community
hiv positive
medical personnel
miracle treatment
national hemophilia foundation
national political landscape
oral histories
plasma
psychological
queen victoria
science researchers
social
socioeconomic groups
the royal disease
Product details
- ISBN 9780520211957
- Weight: 680g
- Dimensions: 152 x 229mm
- Publication Date: 25 Aug 1999
- Publisher: University of California Press
- Publication City/Country: US
- Product Form: Hardback
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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.
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.
