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Long-term outcomes for females with early-onset dystrophinopathy.

Saskia L S Houwen-van OpstalRamon O TakMaaike PelsmaFrederik M A van den HeuvelHermine A van DuyvenvoordeEdith H C CupLilian T L SieJohan S H VlesImelda J M de GrootNicol C VoermansMichel A A P Willemsen
Published in: Developmental medicine and child neurology (2022)
Females with early-onset dystrophinopathy experience a wide range of impairments, comorbidities, limitations in activities, and restrictions in social participation. The whole spectrum should be acknowledged in the healthcare setting. Neuromuscular and cardiac follow-up are indispensable. Additional respiratory assessment and rehabilitation care are expected to improve health status and support daily activities and participation.
Keyphrases
  • early onset
  • healthcare
  • physical activity
  • late onset
  • palliative care
  • left ventricular
  • mental health
  • quality improvement
  • social media
  • health information
  • atrial fibrillation
  • health insurance