Optimizing XLMTM care requires an interdisciplinary approach

A multidisciplinary care team for XLMTM

Optimal care of patients with X-linked myotubular myopathy (XLMTM) should be provided by an integrated, multidisciplinary team, led by a neuromuscular specialist.1,2 Neuromuscular centers are specially equipped to assist patients in getting an accurate diagnosis and standard of care.

The XLMTM care team may comprise specialists in:

Neonatology
Pediatric neurology
Pulmonology / Respiratory care specialist
Genetics and genetic counseling

Additional support to address specific medical complications related to the underlying myopathy may include1,2:

  • Gastroenterology
  • Physical therapy
  • Orthodontics
  • Ophthalmology
  • Nutrition
  • Speech therapy
  • Mental health
  • Orthopedics
  • Social services

Comprehensive Care for XLMTM

“An integrated, multidisciplinary care team led by a neuromuscular specialist can provide optimal care for XLMTM patients.” -Dr Basil Darras

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Early referral to a neuromuscular center can accelerate diagnosis and optimize disease management.

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References

1. Wang CH, et al. J Child Neurol. 2012;27(3):363-382. 2. Dowling JJ, et al. In: Adam MP, et al, eds. GeneReviews®. 2002.

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