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Management of the condition

MPS I and MPS II are managed using a combination of disease-specific therapies (see Treatment options), conventional symptomatic treatments, and surgical interventions.1

Some interventions are required to manage the life-threatening aspects of the disease (e.g. airway obstruction), whereas others are aimed at improving quality of life.2

Management of MPS I/MPS II is complex and requires numerous specialists to address disease involvement in multiple organ systems. Ideally, a designated centre specialising in lysosomal storage disorders should oversee the care of patients with MPS I/II.1,3

MPS I Disease Registry

MPS I Disease Registry

The MPS I Registry is an ongoing, observational database on MPS I disease. Many medical professionals agree that since MPS I disease is rare, accurate and complete information on the disease is especially important.

Multidisciplinary Team Approach

Multidisciplinary Team Approach

The multiple organ systems affected by MPS I/MPS II necessitates a multidisciplinary approach to management involving subspecialists, supportive services and psychosocial support.

Surgical Management

Surgical Management

Learn about the surgical interventions used in the management of MPS I/MPS II, and the complications that need to be considered.

References

  1. 1.Scarpa M, Almassy Z, Beck M, et al. (2011) Mucopolysaccharidosis type II: European recommendations for the diagnosis and multidisciplinary management of a rare disease. Orphanet J Rare Dis 6: 72.
  2. 2.Muenzer J, Beck M, Eng CM, et al. (2009) Multidisciplinary management of Hunter syndrome. Pediatrics 124(6): e1228-1239.
  1. 3.Muenzer J, Wraith JE, Clarke LA, International Consensus Panel on M, Treatment of Mucopolysaccharidosis I. (2009) Mucopolysaccharidosis I: management and treatment guidelines. Pediatrics 123(1): 19-29.