By the 1970s, a therapeutic revolution, decades in the making,
had transformed hemophilia from an obscure hereditary malady into a
manageable bleeding disorder. Yet the glory of this achievement was
short lived. The same treatments that delivered some normalcy to
the lives of persons with hemophilia brought unexpectedly fatal
results in the 1980s when people with the disease contracted
HIV-AIDS and Hepatitis C in staggering numbers. "The Bleeding
Disease" recounts the promising and perilous history of American
medical and social efforts to manage hemophilia in the twentieth
This is both a success story and a cautionary tale, one built on
the emergence in the 1950s and 1960s of an advocacy movement that
sought normalcy--rather than social isolation and
hyper-protectiveness--for the boys and men who suffered from the
severest form of the disease.
Stephen Pemberton evokes the allure of normalcy as well as the
human costs of medical and technological progress in efforts to
manage hemophilia. He explains how physicians, advocacy groups, the
blood industry, and the government joined patients and families in
their unrelenting pursuit of normalcy--and the devastating,
unintended consequences that pursuit entailed. Ironically,
transforming the hope of a normal life into a purchasable commodity
for people with bleeding disorders made it all too easy to ignore
the potential dangers of delivering greater health and autonomy to
hemophilic boys and men.
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