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Children’s Muscular Dystrophy Clinic Offers Multidisciplinary Approach

Muscular Dystrophy, a group of diseases that cause progressive weakness and loss of muscle mass, is caused by genetic mutations that affect the proteins needed to form healthy muscle. Because the heart is a muscle, MD can cause enlargement and scarring of the heart and compromise the “squeeze” of the heart muscle. In addition to affecting heart function, MD can also affect heart rhythm.

Symptoms of the most common variety of MD begin in childhood and are mostly seen in boys, given the way it is passed down through families. Other types can surface later in adolescence or adulthood. While there is no cure for MD, it can be treated with medications and therapies designed to minimize symptoms and slow its course. Some patients may become candidates for heart transplants.

Meghann G. McKane, MD, is a cardiologist in the multidisciplinary Muscular Dystrophy Association (MDA) Clinic, which provides comprehensive diagnostic and treatment services for children with neuromuscular disorders. Because the symptoms of MD vary among patients and all the organ systems of the body work together, the MDA clinic offers families the benefit of stacked appointments, so they don’t need to travel widely for optimal care.

“The clinic includes specialists in the fields of cardiology, neurology, pulmonology, occupational and physical therapy and psychology, among others, which helps the family address all of the different needs of their child in one clinic, under one roof,” Dr. McKane said. “This can be especially important as a child becomes less ambulatory, and it ensures that we’re all working together and taking a holistic approach.”

Dr. McKane follows children younger than 12 years old with MDA annually, typically performing an EKG and echocardiogram at every visit. When patients reach age 12 or when there are changes in cardiac function, she sees them every 6 months or more frequently to monitor and prevent further cardiac changes.

“We take seriously any new symptoms and changes we see in the heart,” Dr. McKane said. “For instance, if I note a weakening in the heart, I may ask when they have last seen the lung doctor. If the pulmonary system needs extra support that it may not be getting, the heart can also start to show that stress. It’s best if these patients can see specialists who have knowledge of the specific nuances of MD.”

To learn more about Muscular Dystrophy, visit the websites of the Muscular Dystrophy Association and Parent Project Muscular Dystrophy. In addition, the Centers for Disease Control and Prevention hosts a Muscular Dystrophy information page.

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.

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