Muscular dystrophy

If your child has been diagnosed with muscular dystrophy (MD), you are probably feeling overwhelmed. It might comfort you to keep in mind that many families have been down this path and learned how to help their child, and you will too. Here at Children’s Hospital Boston, our compassionate, experienced clinicians are here to support you at every step of the way.

Here are some of the basics about MD:

• Muscular dystrophy (MD) describes a broad class of genetic (inherited) diseases that cause muscles in the body to weaken over time.

• MD can be relatively mild, moderate or severe.

• The most common form of muscular dystrophy in children is Duchenne muscular dystrophy (DMD).  Becker muscular dystrophy (BMD) is also relatively common. They are similar and are caused by mutations in the same gene, but BMD is less severe than DMD.

• DMD and BMD affect boys almost exclusively.

• Over time, children with MD experience increasing difficulty in moving their limbs and performing other motor tasks.  Some may experience trouble breathing.

• The life expectancy for children with MD depends on what form of the disease they have, since some forms progress faster than others.

• There is currently no cure for MD, but combined methods of supportive treatment can improve a child’s quality of life and extend his life expectancy.

How Children’s Hospital Boston approaches muscular dystrophy

Since 1977, thousands of children have been diagnosed and treated by Children’s multidisciplinary Neuromuscular Program. A hallmark of our clinic is that it brings together all of the different specialists whose expertise is needed to care for children with muscular dystrophy and other neuromuscular disorders. This means that your child will be able to see his neurologist, orthopedic surgeon and physical therapist at the same time, in the same place. And it means that all of our experts will work closely with each other to develop the best therapeutic plan for your child.

Our multidisciplinary treatment approach involves specialists from Cardiology, Pulmonary, Nutrition, Gastroenterology and other programs at Children’s, all of whom are highly experienced in caring for children with disorders like MD. We’ll involve you in the care plan and listen closely to your concerns, questions and preferences.

Muscular dystrophy: Reviewed by Peter Kang, MD
Children’s Hospital Boston; posted in 2011