Rehabilitation is [still] necessary to optimize function in neuromuscular disorders

Abstract

The landscape of care for children and adults with neuromuscular disorders (NMDs) is rapidly changing as more disease‐modifying treatments (DMTs) become available. These DMTs provide hope and opportunity for evolving phenotypes, though none (yet) are curative. Rehabilitation has been the standard of care for patients with NMDs and should remain so, even with the advent of novel DMTs. An interdisciplinary rehabilitation approach is holistic and comprehensive, addressing functional needs, musculoskeletal complications, pain, durable medical equipment, and bracing needs. This care will continue to be essential for patients who experience impairments and disability, despite receiving DMTs. Additionally, we must consider how to care for a new rapidly expanding cohort of patients aging with NMDs. Children with NMDs are expected to live longer into adulthood; a population that we may not have the workforce to support at this time. At this point, we have the perfect opportunity to reemphasize the importance of rehabilitation in the care of persons with NMDs, while we reexamine historical rehabilitation practices and innovatively deliver services to optimize the effects of these high‐cost DMTs.