title: [Global functional management of mucopolysaccharidoses].
abstract: The management of mucopolysaccharidoses (MPS) requires a multidisciplinary approach and all medical and paramedical specialties may be involved because of the multiorgan nature of the disease. For this reason, patients should ideally be managed in a reference center and their management should be coordinated by an experienced physician who has access to the various specialists through a multi-disciplinary approach. The management is focused on assessments of the numerous features of the disease, study their progression and the effectiveness and pitfalls of specific and non-specific treatments. The main concerns of reeducation and rehabilitation should be to preserve global function through specific goals to be set along with the child and its family. This is a very demanding approach for the patient and family in which education plays a fundamental role in order to ensure optimal management.
authors: Service de neurologie pédiatrique, centre de référence des maladies héréditaires du métabolisme, hôpital d'enfants, CHU Timone, 264, rue Saint-Pierre, 13385 Marseille cedex 5, France. Electronic address: catherine.caillaud@inserm.fr.
authors: C
authors: C
authors: Boulay
authors: Unité de rééducation polyvalente, hôpital Necker-Enfants malades (AP-HP), 149, rue de Sèvres 75015 Paris, France.
authors: M
authors: M
authors: Lemoine
authors: Service de neurologie pédiatrique, centre de référence des maladies héréditaires du métabolisme, hôpital d'enfants, CHU Timone, 264, rue Saint-Pierre, 13385 Marseille cedex 5, France.
authors: B
authors: B
authors: Chabrol
mesh_terms: D002648:Child; D006801:Humans; D009083:Mucopolysaccharidoses / Q000175:diagnosis / Q000628:therapy*