Muscular dystrophy (MD) can feel like a daunting diagnosis, but physical therapy plays a critical role in helping children with MD maintain flexibility, strength, and quality of life. As pediatric therapists, our goal is to help families understand how therapy fits into long-term care and why early and consistent involvement is so valuable.
What is Muscular Dystrophy (MD)?
Muscular dystrophy refers to a group of genetic disorders that cause progressive muscle weakness and loss of muscle mass over time. There are many types of MD (more than 30), with varying onset, severity, and progression.
There are nine main types of muscular dystrophy:
- Duchenne muscular dystrophy
- Becker muscular dystrophy
- Myotonic muscular dystrophy
- Facioscapulohumeral muscular dystrophy
- Congenital muscular dystrophy
- Limb-Girdle muscular dystrophy
- Emery-Dreifuss muscular dystrophy
- Distal muscular dystrophy
- Oculopharyngeal muscular dystrophy
But, within these types there are over thirty different variations and subtypes.
What Causes Muscular Dystrophy?
Certain genes are involved in making proteins that protect muscle fibers. Most muscular dystrophy happens when one of these genes goes through an irregular change.
Early Signs + Diagnosis of Muscular Dystrophy:
Knowing the early signs of MD can help parents advocate for evaluation and support for their child.
- Developmental delays in motor milestones (sitting, crawling, walking) are common.
- The “Gower’s sign”, where the child uses their hands to push off their thighs to stand up, is often an early clue of pelvic muscle weakness.
- Other signs may include difficulty with stair climbing, frequent falls, or muscle stiffness/contractures.
- Diagnosis typically involves blood tests, genetic testing, and sometimes a muscle biopsy.
How Can Physical Therapy Help a Child With MD?
1. Help Maintain Flexibility
- Regular, gentle stretching helps prevent or delay contractures (tightening or shortening of muscles/tendons).
- Support safe movement and posture:
- PTs guide children in movement strategies that reduce fatigue and optimize efficiency.
- They may recommend and train in the use of adaptive equipment (braces, orthoses, seating systems, wheelchairs) to help maintain mobility and independence.
2. Promote Respiratory Health
- Weaker muscles can affect breathing. PTs work on breathing exercises and chest mobility to support respiratory function.
3. Provide Age-Appropriate Strength and Activity Guidance
- PTs design low-impact, moderate exercise programs that keep muscles active without overworking them.
- Activities like swimming or gentle cycling may be encouraged as per Duchenne therapy guidelines.
- PTs also help with “functional fitness” – making sure movement ties into everyday life.
4. Prevent/Manage Complications:
- Through regular evaluations, PTs can detect early signs of contracture, posture issues, or decline in mobility.
- If surgery is needed, PTs help with pre- and post-operative planning, bracing and recovery.
Physical Therapy as Ongoing Support for Muscular Dystrophy
Muscular dystrophy is a lifelong condition, and while there isn’t yet a cure, physical therapy is one of the most powerful tools we have to preserve mobility, manage symptoms, and support a child’s participation in meaningful activities.
As PTs, we’re not just treating a diagnosis; we’re partnering with families to create a quality of life that is as strong and rich as possible.
Below are some resources for families with loved ones who have MD:
