Incorporation of Biomedical Knowledge in Sickle Cell Disease (SCD) Representations of a Guadeloupe Schooled Population (FWI): Marie-Galante Profile
Pruneau, Jérôme, Ferez, Sylvain, Maillard, Frédéric, Dumont, Jacques, Ruffié, Sébastien, Hue, Olivier, Caribbean Quarterly
Sickle cell disease (SCD) is the most expanded genetic disease in the world (Bardakdjian J. and Wajcman H., 2004). It affects as much the male as the female population. Its variability and complexity make the task all the more harder for the medical body. If in certain countries - in Africa notably - the authorities confront social and economic difficulties in the caring of the patients, in Guadeloupe sickle cell disease is recognized as a public health priority since 1990. In this French overseas department (FOD), 40,000 to 50,000 people are S-gene carriers, or approximately one tenth (1/10) likely to pass the disease over their children, most of the time unknowingly. Each year, there are twenty-five to thirty new-born sickle cell sufferers in this department, or approximately 1/260 (Benkerrou M., Denamur E., and Elion J., 2003). The share is identical in Martinique and French Guyana.
This epidemiological situation drove the department authorities of Guadeloupe to create the first centre entirely dedicated to this disease, the Centre Caribeen de la Drepanocytose (Caribbean Center for SCD). Its originality holds in the fact that it fully takes in charge the disease: genetic advice, medical treatment, psychological service, social aid, research. At the crossroads of the hematology, pediatrics and new genetics emerged a new category of physicians: the "SCD experts" - "super general practitioners". Through this very specific status - and far more than for any other chronic diseases -the SCD expert embodies, in the eyes of the parents of the children suffering from SCD, the holder of a "knowledge-power" of what their offspring can or cannot do.
In France, few Sociology-Anthropology scholars involved in research on SCD (Laine A, 2004; Bonnet D. and Jaffré Y., 2004; Bonnet D., 2004), which is also of little importance in the West Indies (Tournebise S., 1997; Benoit C, 2004; Bibrac A. and Etienne-Julan M., 2004). Exercise Physiology studies have focused specifically on the sickle cell trait carriers (AS) (Le Galláis D., 1990; Hue and coll., 2002; Callahan et coll., 2002; Delclaux and Coll., 2005). Beyond the factors which limit the performance in process and during a post-critic period, SCD is characterized as a complicated, insidious and painful disease which still turns out to be fatal. Exercise may produce vaso-occlusive crises, but also the appearance of femoral and humerus osteonecroses, in conditions of growth, of delayed puberty and of increased protein needs (Stuart M. J. and Nagel R. L., 2004).
If crises and pain call for medical care, apprehending the representation of SCD belongs to a set of symbolical thinking systems which Health Anthropology echoes in order to go beyond the medical vision of the disease. For instance, it is well-known how often the novice reappropriation of the scholarly representations - particularly the biomedical ones (Moscovici S., 1961) - favors a "travesty" interpretation of SCD phenomenon by showing the potential limits of the medical discourse and of its comprehension. The study done on the "daily living with the disease" and of its monitoring in sport environments in SS-Type SCD-suffering adolescents of Guadeloupe proved that the experiences lived overcome prevention discourses, ottener generalizing and referring back the appreciation of the phenomenon to the field of social and cultural identity (Pruneau et coll., 2008).
In 1994, Bougerai (1994) had already shed light on the cultural and traditional factors at work in the West Indies that result in a lack of social visibility of the disease, to its oblivion, as well as to some confusion in the representations of illness, especially when they are related with anemia and blood. The latter becomes the support of imaginary projections which make the resorts to filiation hardly comprehensible - particularly in the way of thinking heredity (Bonniol J. L. and Benoist J., 1994) - and which also put forward how "in this system of representations, the genotype and the cultural patrimony come within these substitutive symbolical relations" (5: 66). …