ANEMIA FALCIFORME COMO EXPERIÊNCIA: RELAÇÕES ENTRE VULNERABILIDADE SOCIAL E CORPO DOENTE ENQUANTO FENÔMENO BIOCULTURAL NO ESTADO DO PARÁ

Résumé

Sickle Cell Anemia (SCA) is a chronic, hereditary disease with high prevalence among people of African descent in Brazil. There are few studies about the reality of the affected individuals in the Amazon. SCA can be considered a biocultural disease as it involves evolutionary, genetic, environmental socioeconomic and cultural aspects which influence the daily living of the patients. This qualitative, ethnographic research was conducted with a sample of 40 individuals HB*SS – or their parents, when children – from several municipalities of Pará State representing about 10% of the people in treatment at the Pará State reference center on blood diseases. The study investigates the social vulnerability, life experiences, perceptions of health and illness, use of folk medicine, stigma and prejudice suffered, and difficulty of access to public health services (SUS) of the individuals affected in order to understand the experience of living with SCA.Keywords: Sickle Cell Anemia, social vulnerability, Amazonia