Une pure merveille !
Un roman d'une grande beauté, drôle, fin, extrêmement lumineux sur des sujets difficiles : la perte de
l'être aimé, la dureté de la vie et la tristesse qu'on barricade parfois... Elise franco-japonaise,
orpheline de sa maman veut poser LA question à son père et elle en trouvera le courage au fil des pages,
grâce au retour de sa grand-mère du japon, de sa rencontre avec son extravagante amie Stella..
Ensemble il ne diront plus Sayonara mais Mata Ne !
Hemophilia is a genetic blod-clotting disorder occurring in mals but transmitted by females. Dubbed " the royal disease " because of its identification...
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Hemophilia is a genetic blod-clotting disorder occurring in mals but transmitted by females. Dubbed " the royal disease " because of its identification with Queen Victoria, the world's most renowned carrier, hemophilia is much more than a disease, as Susan Resnik ably demonstrates in Blood Saga. It is also a social, psychological, and economic experience, and the hemophilia community's story over the past fifty years has meaning for all who are concerned with medical care in the United States.
The hemophilia population includes Americans from every socioeconomic and ethnic group, and Resnik's narrative never loses touch with the individuals within that population. Reading of the founders of the National Hemophilia Foundation, which became the wellspring for developing support groups and disseminating information, we sense their despair as well as their determination. Resnik's stories of hemophilia sufferers, and those of their wives and children, some of whom became infected with the AIDS virus from contaminated blood, include experiences of cruel ostracism : children banned from public school, a home set on fire.
The hemophilia population initially evolved into what anthropologists call a "communitas," a community of empathy, which was gradually transformed into a
politically vocal constituency interacting with the U.S. health care system. In certain ways the hemophilia community is a microcosm of American society, and Resnik's account of that community's adaptation and empowerment provides examples worth emulating as well as pitfalls to avoid.
Today gene insertion therapy for people with genetic defects holds the promise of a cure for hemophilia in the near future. At the same time new technologies for prolonging life have raised troubling questions of medical ethics. The hemophilia community's experience of gaining control and then losing it is relevant to our current struggle for health care reform, and Blood Saga holds important lessons for every American.
Sommaire
The Dismal Era: Because the Blood Comes from the Woman
The Years of Hope, 1948-65
A Research Milestone Heralds the Golden Era, 1960-65
The Hemophilia Community Enters Politics: The Late 1960s and Early 1970s
Politics and the Blood Business in the Golden Era
The Meanings of the Golden Era
The AIDS Era Begins: The Years of Confusion and Denial, 1980-82
The AIDS Era, 1982-85: Tension Mounts, Conflicts Erupt
The AIDS Era, 1985-88: The Hemophilia Community Rises to the Challenge
"A Vote for the Status Quo," 1988-92
Approaching the Biotech Century: Out with the Old, In with the New, 1992-98.Lessons to Be Learned.
S U S A N R E S N I K teaches first-year medical students at the University of California, San Diego. She is former Director of Education of the National Hemophilia Foundation. She lives in Del Mar, California.