Blood Saga: Hemophilia, AIDS, and the Survival of a Community, Updated Edition With a New Preface [Kindle Edition]
Author: Susan Resnik | Language: English | ISBN: B003Y73Q20 | Format: PDF, EPUB
Blood Saga: Hemophilia, AIDS, and the Survival of a Community, Updated Edition With a New Preface
Download electronic versions of selected books Blood Saga: Hemophilia, AIDS, and the Survival of a Community, Updated Edition With a New Preface [Kindle Edition] for everyone book mediafire, rapishare, and mirror link
Download electronic versions of selected books Blood Saga: Hemophilia, AIDS, and the Survival of a Community, Updated Edition With a New Preface [Kindle Edition] for everyone book mediafire, rapishare, and mirror link
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.
Books with free ebook downloads available Blood Saga: Hemophilia, AIDS, and the Survival of a Community, Updated Edition With a New Preface [Kindle Edition] 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.
- File Size: 4127 KB
- Print Length: 308 pages
- Publisher: University of California Press; 1 edition (August 25, 1999)
- Sold by: Amazon Digital Services, Inc.
- Language: English
- ASIN: B003Y73Q20
- Text-to-Speech: Enabled
- Lending: Enabled
- Amazon Best Sellers Rank: #922,082 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
- #67 in Kindle Store > Kindle eBooks > Nonfiction > Professional & Technical > Medical eBooks > Diseases > AIDS & HIV
Fascinating read where the cure for the hemophilia community ended up killing those it meant to save. Resnick's style makes easy reading of a complex story.By A Customer
Personally, I find Ms. Resnick's book fascinating. She gives a very good outline of the history of hemophila and how advances in technology became both a savior and a downfall to the community. I dont think she sweeps anything "under the rug." I think the prior poster needs to consider that at the time this book was written, the verdict was not completely out yet and Resnick wanted to take a more historical approach to determine how the initial corporate-patient group relationships were formed and how the problem arose in the first place.By jbdean
The structure and story given by Ms. Resnick I believe comes across as objective as possible, which is difficult to prepare on a topic such as this. I think is actually a cautionary tale to medical patient communities and how they should NOT too closely align themselves with corporate entities, and how small accessions can lead to a slippery slope to total integration of the two.
Unfortunately, at the time clotting drugs came on the market what other choice did affected families have? The results were SO drastic and the alternative outcomes SO different, patients had no option. As Resnick points out, they really had no alternative but to become "canaries in a mine shaft," at the time they were canaries for the blood supply, they have now also become canaries about corporate-patient relationships.
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