Columbia Center for Oral History Portal > Oral history interview with Charles Carman, 1990
Creator: | Carman, Charles | Project: | Hemophilia oral history collection. (see all project interviews) | Phys. Desc. : | sound file : digital preservation master, WAV files (96 kHz, 24 bit) | Location: | Columbia Center for Oral History | Full CLIO record >> |
Scope and ContentsChildhood in New Mexico; diagnosis of and experience with hemophilia and with hospitalizations for treatment; ethic of voluntarism in hometown and its influence on him; change in treatment from whole blood to fresh frozen plasma to cryoprecipitate and to comprehensive care; issues of "denial"; lack of risk-taking behavior as child/teen with hemophilia; factors which produced many hemophilia leaders out of Ohio, versus people with hemophilia influencing those factors; involvement in local hemophilia chapters; aspects of the hemophilia "community"; experiences with discrimination on the job site due to having hemophilia; involvement in defining state standards for comprehensive care centers; involvement in National Hemophilia Foundation (NHF); problems at NHF and consequent election and experiences as its President; definition of hemophilia "community" and roles and responsibilities of each of its elements; role of the federal government in relation to the hemophilia community; "Blood Money" game/simulation of problems and outcomes in relation to hemophilia care; involvement in World Federation of Hemophilia (WFH); and its international hemophilia training centers; limitations in hemophilia care in developing countries; economic aspects of hemophilia care in the future; possibilities of future cure for hemophilia through gene therapy; changing relationship between WFH and NHF; personal philosophies and rewards of leadership in the hemophilia community
SubjectsAccess ConditionsCopyright by the Trustees of Columbia University in the City of New York, 2016
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