[Global functional management of mucopolysaccharidoses]

Arch Pediatr. 2014 Jun:21 Suppl 1:S46-9. doi: 10.1016/S0929-693X(14)72259-6.
[Article in French]

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.

Publication types

  • English Abstract

MeSH terms

  • Child
  • Humans
  • Mucopolysaccharidoses / diagnosis
  • Mucopolysaccharidoses / therapy*