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Condition

Muscular Dystrophy

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What Is Muscular Dystrophy?

Muscular dystrophy (MD) refers to a group of inherited genetic disorders characterised by progressive weakening and degeneration of the muscles that control movement. The most common and severe form in children is Duchenne Muscular Dystrophy (DMD), caused by a mutation in the dystrophin gene on the X chromosome, affecting almost exclusively boys. Other forms include Becker MD, limb-girdle MD, facioscapulohumeral MD (FSHD), and congenital MD.

Symptoms and Disease Progression

In DMD, early symptoms — waddling gait, difficulty climbing stairs, frequent falls, and calf pseudohypertrophy — typically appear between ages 3–5. The ability to walk is usually lost between ages 9–12 without treatment. Respiratory muscle weakness and cardiomyopathy become significant in the later stages. New disease-modifying treatments (exon-skipping therapies, corticosteroids) are slowing this progression.

Rehabilitation at ROMMER

Rehabilitation in muscular dystrophy is not about curing the disease — it is about preserving function for as long as possible, preventing complications, and maintaining quality of life at every stage:

  • Ambulatory Phase: Stretching and strengthening exercises to delay contracture formation and prolong walking ability. Gentle aerobic activities (swimming, cycling) maintain cardiovascular fitness without overloading weakened muscles.
  • Transition to Wheelchair: Power wheelchair prescription, seating and posture optimisation, and upper limb function training to maintain independence.
  • Respiratory Physiotherapy: Breathing exercises, assisted cough techniques (manual, mechanical insufflation-exsufflation), and secretion clearance to protect respiratory capacity. Non-invasive ventilation (NIV) support when indicated.
  • Contracture and Scoliosis Management: Regular stretching, night splinting, and spinal orthoses to slow progression. Surgical scoliosis correction is planned when indicated in collaboration with spinal surgery.
  • Cardiac Rehabilitation: Monitored low-intensity exercise programme to support cardiac function, in coordination with cardiology.
  • Occupational Therapy: Adaptive equipment, home modifications, and assistive technology to support participation in education and daily life.

Psychosocial Support

Living with a progressive condition profoundly affects children and families. At ROMMER, psychological support, peer connection, and family counselling are integral parts of the care plan — not add-ons.

Frequently Asked Questions

Can exercise make muscular dystrophy worse?+
Not when prescribed appropriately. High-intensity or eccentric exercises can damage already fragile muscle fibres, so the programme must be carefully tailored. Low-to-moderate intensity aerobic activity, stretching, and aquatic therapy are generally safe and beneficial. At ROMMER, exercise intensity is always calibrated to the child's current strength level.
What is the role of corticosteroids in DMD?+
Corticosteroids (deflazacort or prednisone) are the standard disease-modifying treatment for DMD. They slow the loss of muscle function and prolong walking by several years. Rehabilitation is planned alongside steroid treatment, taking into account side effects such as weight gain and bone fragility.
When should respiratory physiotherapy start?+
Ideally before significant respiratory muscle weakness develops — typically around ages 5–6 in DMD. Baseline pulmonary function tests (spirometry) guide timing. Once FVC drops below 50–60%, non-invasive ventilation planning becomes urgent.
How can we support our child's participation in school?+
Occupational therapy assessment at ROMMER identifies specific challenges — handwriting fatigue, mobility in school, accessing technology — and produces practical recommendations for school staff. Assistive technology and adaptive seating can make a significant difference.

Would You Like to Book an Appointment?

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