EXPERIÊNCIAS FALCIFORMES DE EXISTÊNCIA DE MULHERES DE JOÃO PESSOA, PARAÍBA

Abstract

This course conclusion work is one of the developments of the scientific initiation project entitled “Biomedicine, genetic illness and citizenship: anthropological study on sickle cell disease, health practices and struggles for health care / rights in the state of Paraíba, Brazil”. Aiming to study and understand the life experiences of women with sickle cell disease (SC) in João Pessoa, Paraíba. That is, assuming that their life and illness experiences go beyond reproductive and maternity issues. Since, most studies on the experience of the disease of women with SC deal with these problems, it seemed relevant to investigate other aspects of these women's experiences, such as: their life trajectories, work relationships and sociability. For this, a qualitative socio-anthropological research was carried out, using two semi-structured and in-depth interviews, in the terms of Beaud and Weber (2007), with Ivone and Leila. From the reports, we could understand that there are two orders of implications of illness in the lives of women: one involving the physical-organic dimension, related to the learning of the disease and self-care; another, of a social order, related to the personal and social implications in the life experience of these women. In the so-called physical dimension, surviving the disease and the lack of adequate health care is a constant challenge. For them, SC is a serious disease, neglected by the State and health services and, therefore, invisible to society. The interlocutors report that their lives were/are shaped and limited by the disease, so that having self-care strategies in daily life, as well as knowing and respecting the limits of their bodies, becomes essential to avoid sickle cell crises and have a minimum of quality of life. They reported that life with SC had an impact on schooling, work and social life, Ivone says that her life is full of limitations, while Leila says she feels that the disease "pruned" it, preventing it from developing. Finally, this study consists of an effort to bring experiences of illness and its implications for the lives of two women, emphasizing the problems faced by people with SC in Paraíba. Ivone and Leila report their difficulties as people with the right to social life, resulting in the denunciation of institutional racism, so that it is up to social control to take ownership of jobs like this in order to fight for public rights and policies.