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PIMENTEL, Bruna Tavares; NEVES, Ednalva Maciel  and  PIRES, Flávia Ferreira. "Without a drop of color": experiences of children and adolescents with sickle cell disease in Paraíba (Brazil). Desidades [online]. 2021, n.29, pp. 82-99. ISSN 2318-9282.

ABSTRACT This article reflects on the perspectives of children and adolescents living with sickle cell disease or sickle cell anemia as it is known; problematized through the experience and the limits of life with the disease. It is a genetic disease that affects the black population, which has consequences for diagnosis and treatment. The study was carried out with parents, guardians, children and adolescents in cities and in the capital of Paraíba, Brazil. The dialogue with the interlocutors took place through the production of drawings and semi-structured interviews. This approach allowed us to conclude that the understandings and experiences of the disease associate it with a change in the blood, marked by crises of pain as a unique expression of the disease. The ignorance of health professionals about the disease, as well as in the school environment, reinforces the logic of institutional racism, resulting in bullying, prejudice of class and race.

Keywords : sickle cell anemia; disease experience; child; racism.

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