Abstract
Sickle cell disease is the most common genetic disease in the world and in the French Antilles, where it is regarded as a national public health priority, it has significant impacts on the daily lives of young sufferers, affecting not only their physical health, but also their quality of life and social participation. It is in the school environment, a learning and socialising space, that the burden of the disease is heaviest. This study, conducted among sickle cell patients (n = 81) and healthy individuals (n = 45) aged from 6 to 16 living in Guadeloupe, is based on the Disability Creation Process ecological model (Fougeyrollas, 2010; Fougeyrollas and Cloutier, 2016). The work presented questions the lived experience of sickle cell patients, particularly in education, and draws on analyses arising from different types of quantitative and qualitative materials (i.e. MHAVIE and MQE scores, biographical interviews with young sickle cell patients and their family circles and other relevant actors, n = 43). Quantitative data relating to the quality of social participation and the environment, set out in previous works (Cholley-Gomez et al., 2022a; Cholley-Gomez et al., 2022b) demonstrate the impact of the disease, particularly in terms of situations of disability or restricted social participation encountered in leisure and educational settings in an acutely limiting physical and social environment. Qualitative data make it possible to refine these results. Among children and adolescents, the lived experience of sickle cell disease, particularly in the educational sphere, is characterised by the issue of the disease’s invisible nature. This issue, however, is perceived with a certain ambivalence, since sickle cell sufferers, seeking normalisation, adopt strategies to hide and control the visible signs of their disease, thus affecting its management; at the same time, discourses show strategies to reveal the illness and a need to recognise the difficulties and limitations related to it, which educational personnel and the general public are ultimately largely unaware of or unfamiliar with.