Reading through two life stories of children with sickle cell anemia, a boy and a girl in Senegal : A case series

Résumé

This article gives the sociography of two cases of sickle cell anemia, a common congenital disease in Senegal. We aim at illustrating the need to reconstruct networks of sociabilities around it. The life stories of the two cases are the result of research carried out as part of the ENSPEDIA project entitled "Childhood and Pediatric Care project in West Africa, from the experience of patients in health services to the assessment of the quality of care perceived." Such cases are a girl and a boy, both with SS-form sickle cell anemia, aged 12, and live in the department of Mbour, 70 kilometers from Dakar, the capital of Senegal. Our findings showed that the experience of the disease and the different adopted forms of resilience pertained to socio-economic conditions are particularities of such cases. Sickle cell anemia develops multiple complications that are difficult to experience. The two children are in significant pain; worries are constant and controlled by the level and transmission of disease knowledge gained from the near entourage and the caregivers. Building a network of solidarity is a fundamental asset in the daily management of the disease, allowing for apprehending a psychosocial reading of sickle cell disease beyond the strictly medical aspect.