Scoliosis, or a curved spine, is common complication of Duchenne muscular dystrophy (DMD). Scoliosis can lead to breathing difficulties, pain and discomfort; in severe cases, it can leave patients bed-bound. A multidisciplinary approach can help delay the start of DMD-related scoliosis, and prevent it from becoming severe.
What is scoliosis?
Scoliosis is a spinal deformity where the spine develops an irregular sideways curve. The spine also twists or rotates. When scoliosis occurs in pre-teens without DMD, it is usually mild. However, cases of DMD-related scoliosis are more severe and progress quickly.
Why do boys with Duchenne develop scoliosis?
Researchers don’t fully understand why DMD often leads to scoliosis, but they believe that increasing weakness of the spinal muscles plays a major role. Limited mobility is also a factor. Scoliosis often develops within two years after a patient begins using a wheelchair full time.
How does scoliosis impact those with DMD?
Scoliosis can reduce lung volume, as the spine’s curve compresses the chest cavity. This means that respiratory function, which is already impacted by DMD, deteriorates even more. Scoliosis can also mean reduced autonomy of movement and discomfort. Many patients are unable to sit comfortably because their uneven weight distribution puts too much pressure on the body.
How to delay the onset of scoliosis
The onset of scoliosis can be delayed through a combination medical treatment, maintaining physical mobility for as long as possible and physical therapy.
- Steroids: Corticosteroids have been shown to have many benefits in managing DMD, including delaying or preventing the onset of scoliosis, prolonging mobility, maintaining muscle strength and supporting respiratory and cardiac function. However caution needs to be taken, as steroid therapy can reduce bone density, leading to a greater risk of fractures.
- Physical therapy: Maintaining mobility can delay the onset and reduce the severity of scoliosis in DMD. Specialized physical therapy programs can help maintain muscle flexibility and strength, which in turn helps support the spine and overall posture.
- Assistive devices: Walking devices such as orthotics and braces can help patients walk for longer, which can help delay scoliosis.
Learn more about DMD treatment and care
How to manage scoliosis in DMD
Your doctors will watch for signs of scoliosis. When it develops, a multidisciplinary health care team including physiotherapists, physical therapists, cardiologists, respiratory function therapists and spine specialists will collaborate on care management. While scoliosis cannot be reversed, steroid therapy and continuing to support muscle flexibility and strength through physical therapy will aim to prevent severe long-term consequences.
Spinal fusion surgery is the only effective way to correct the abnormal spine curvature, relieve pain and improve breathing function. It can have a significant impact on quality of life for young adults living with DMD. Yet it can also make it more difficult for those with DMD to raise their arms. The decision to get surgery is a complex one, and is best discussed with your doctors.
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