As their back muscles weaken, people with Duchenne may develop scoliosis, or curvature of the spine. Once a person is in a wheelchair most of the time, it becomes more likely that scoliosis will develop.

Parents and carers can play an important role in protecting a young person’s spine by regularly checking the seated position in the chair and making adjustments to prevent the young person leaning as they grow.

If a curve in the spine starts to develop it is likely to progress rapidly and your child’s doctors may recommend spine surgery.

The surgery involves straightening the spine by placement of a metal rod. People that have undergone this surgery have reported the following benefits:

  • Improvement in sitting comfort and stability
  • Removal of previous back pain
  • Not having to lean on one arm to maintain balance
  • Enjoying a straighter, taller appearance

There are no published randomised controlled trials investigating the effectiveness of surgery for Duchenne so it is not known if there are further benefits from surgery such as improving lung function or prolonging life expectancy.

Contractures & Heel-Cord Surgery

Limb contractures are a common in Duchenne. They are caused by muscle weakness and they contribute to increased disability. There can be a loss of range of movement (ROM) in any joint in the body but usually occurs first in the ankles. Different joints are affected at different stages of the disease. Evaluation of ROM should be done at every clinic visit and all joints should be assessed (shoulders, elbows, wrists, fingers, hips, knees and ankles).

Physiotherapy (PT) is important to maintain ROM and should be started as early as possible and continued lifelong. The PT programme will be individual for each person with Duchenne.

Sitting and wheelchair positioning is critical for reducing contractions and the risk of scoliosis. Consistent use of night splints on the feet can help maintain function. Daytime resting hand splints can also assist with the prevention of hand/wrist/finger contractions.

A surgical procedure on the foot that lengthens the Achilles tendon, also known as heel-cord sugery, allows the muscles to stretch. This may prolong ambulation/standing for up to 3 years when done at the right time.