Experiences growing up with hemophilia; division of "hemophilia life" in to three periods: treatment with fresh frozen plasma from birth to age 12; switch to cryoprecipitate; advent of HIV; positives and negatives of attending a school for "crippled children"; changes in physicians and their treatment philosophies throughout childhood and teenage years; effect of hemophilia on social life; mother's support network; aspects of socializing in the hospital among children with hemophilia; aspects of the "hemophilia community"; change over time from being very open about his hemophilia to being very private about it as a result of HIV; physicians as childhood role models; aspects of denial among people with hemophilia and with HIV; questions regarding the dissemination of advice from the National Hemophilia Foundation (NHF) regarding HIV transmission, whether to have children, etc.; positives and negatives of the medical treatment-center approach to treating hemophilia; effects of advent of HIV on treating hemophilia at treatment centers; the future of hemophilia treatment; economic issues regarding hemophilia treatment
Hemophilia--History.--United States; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Hemophilia in children; Pierce, Glenn; National Hemophilia Foundation
Format
oral histories; sound recordings
Genre
Interviews
Date
1990
Note
Interviewed by Susan Resnik on October 24, 1990
Note (Provenance)
University of North Carolina Chapel Hill, Health Sciences Library, Gift, 2018