Reminiscences of Richard Johnson : oral history, 1991; Oral history of Richard Johnson, 1991
Abstract
Childhood in inner-city Philadelphia; early experiences with hemophilia; family history of hemophilia and lack of medical treatment due to religious beliefs; early "remedies" such as peanut butter; risk-taking behaviors as a child; apparent differences in access to treatment due to race/ethnicity; childhood experiences with hospitalization and lessons learned as a result; discrepancies between expe riences at a school for the "handicapped" and experiences in the outside world; dealing with hemophilia as a member of a lower socio-economic class; financial assistance from local hemophilia chapter; childhood rebelliousness; early experiences with home care; consequent increase in school attendance and physical activity; experiences in high school; difficulties in attending college due to hemophilia; effects of low self-esteem among minorities and among people with hemophilia; experiences with pain and with pain medication; apparent discrimination against African-Americans in the treatment of hemophilia - e.g., the belief that hemophilia is the "royal disease" and consequently doesn’t exist among minorities; problems getting health insurance as a person with hemophilia; involvement in a study regarding mental health and frequency of bleeds; experiences with meditation and hypnosis; disability due to frequency of bleeds and pain; exposure to HIV via blood products; lack of information regarding treatment options; involvement with National Hemophilia Foundation’s (NHF) Chapter Outreach Development Program (CODP) and education of minorities regarding risk reduction and hemophilia issues in general; issues regarding race and class in treatment of hemophilia; advent of Men’s Action Network (MANN); difference between a "population" and a "community" of people with hemophilia; differences in treatment and services received based on economic status of people with hemophilia; family relationships among people with hemophilia; lack of social services for minority people with hemophilia; methods of empowering minority people with hemophilia; differences in care of hemophilia over time; differences in HIV treatment between people with hemophilia and others
Hemophilia--History.--United States; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Hemophilia in children; Johnson, Richard; National Hemophilia Foundation