par De Pauw, S.;Maccioni, Johanna;Efira, André
Référence Revue médicale de Bruxelles, 35, 2, page (87-95)
Publication Publié, 2014
Article révisé par les pairs
Résumé : The sickle cell disease is a genetic disease of the hemoglobin, also called sickle-cell anemia. It is the most common genetic disease in the world. It is nevertheless still enough underestimated by the general public and even sometimes by the medical world. The patients who are affected suffer, besides a chronic anemia, extremely painful vaso-occlusive crises and possibly diverse complications. Because of the extension of their life expectancy, due to important medical progress, the patients are required to go to the hospital for adults. The object of this article is to try to draw a portrait of these patients and the multiple obstacles with wich they are confronted. These teenagers or grown-up young people have indeed to face important physical problems wich have significant psychological impact. How do they reconcile adolescentaire crisis and management of the disease ? How can the hospital welcome at the best these " new " patients ?