Quand l'hérédité bouscule la famille: Enfants drépanocytaires, les parents témoignent
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La dr�panocytose, maladie g�n�tique grave, li�e � une mutation de l'h�moglobine, est malheureusement tr�s fr�quente en France et dans le monde. La naissance d'un enfant atteint fait d�vier les familles vers un chemin chaotique, dangereux et bien mal trac�. M�me avec les progr�s continuels des soins, une grande incertitude pronostique persiste qui tient pour une bonne part aux conditions d'acc�s r�el aux soins optimis�s. Ainsi il est aujourd'hui imp�ratif de donner la parole aux familles confront�es � cette maladie et � ses complications.
Bonnet, Doris: - Marie-Hélène Buc-Caron est Docteur es Médecine et Docteur es Sciences, biologiste du développement; elle est ancien chercheur à l'Institut Pasteur. Elle a participé activement aux réseaux de lutte contre la drépanocytose, en RDC et en Ile-de-France. Doris Bonnet est Directrice de recherche émérite en anthropologie à l'Institut de Recherche pour le Développement (IRD), membre du CEPED (UMR IRDUniversité Paris Descartes) et de l'équipe SAGESUD (ERL INSERM U1244). Spécialiste en anthropologie de la santé et de la petite enfance, elle a travaillé au Burkina Faso, au Cameroun et en milieu migrant en France. Frédéric Galactéros est Professeur de Génétique Clinique à l'Hôpital Universitaire Henri Mondor U-PEC (Créteil France). Il est responsable depuis 1992 de l'Unité des Maladies Génétiques du Globule Rouge et coordonnateur du Centre National de Référence Maladies rares (Syndromes Drépanocytaires Majeurs) depuis sa création en 2004.
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