Muscular Dystrophy

What Is Muscular Dystrophy?

Muscular dystrophy is a genetic disorder that weakens muscles over time. There are many different types of muscular dystrophies. Each type begins at a different age and may cause mild or severe muscle weakness.

What Are the Types of Muscular Dystrophy?

Different types of muscular dystrophy (DISS-truh-fee) affect different muscles and cause different degrees of muscle weakness.

The two most common types are:

• Duchenne muscular dystrophy: This is the most common and most severe form of muscular dystrophy. It affects boys more often than girls. Girls can carry the gene that causes Duchenne, but usually have only mild symptoms. Boys usually begin to have problems by age 3–5, when muscle weakness affects walking, climbing steps, and other activities. Most boys will need to use a wheelchair by age 12. The breathing muscles and heart muscle may weaken in the teen years.
• Becker muscular dystrophy: While similar to Duchenne, this type progresses more slowly. Symptoms usually begin during the teen years.

What Are the Signs & Symptoms of Muscular Dystrophy?

When symptoms first start, kids with Duchenne or Becker muscular dystrophy might:

• have trouble climbing stairs
• be clumsy
• trip and fall a lot
• toe walk
• have leg pain
• have weak arm, leg, or face muscles
• have large calves

Symptoms of Duchenne (dew-SHEN) and Becker muscular dystrophy are progressive. This means that they get worse over time. Kids with muscular dystrophy may also develop scoliosis (curved spine), heart problems, breathing problems, and trouble walking.

What Causes Muscular Dystrophy?

Muscular dystrophy is a genetic condition. Genetic conditions are passed from a parent (or parents) to their child. In muscular dystrophy, a gene change prevents the body from making the proteins needed to build and maintain healthy muscles.

A genetic counselor can help parents understand how muscular dystrophy can run in families.

How Is Muscular Dystrophy Diagnosed?

Doctors diagnose muscular dystrophy by:

• asking questions about symptoms
• doing an exam
• asking if others in the family have muscular dystrophy
• doing blood tests, including genetic testing
• taking a muscle biopsy (looking at a small piece of muscle under a microscope)
• doing an EMG (a test that checks how the nerves and muscles are working together)
• doing an EKG or echocardiogram to check the heart

How Is Muscular Dystrophy Treated?

There’s no cure for muscular dystrophy. But treatments can help people stay as active and independent as possible. Clinical trials are ongoing and new medicines are being developed to treat and possibly cure muscular dystrophy.

Treatment for muscular dystrophy depends on how old the child is, what kind of muscular dystrophy they have, and how severe it is. Treatment may include:

• physical therapy
• a walker, wheelchair, or crutches
• braces and splints
• breathing support
• medicines
• nutritional counseling
• surgery for scoliosis

How Can Parents Help?

If your child has muscular dystrophy, a care team of medical specialists will work with you and your family to help your child get the best care. The care team may include: a neurologist, orthopedist, pulmonologist, physical therapist, occupational therapist, nurse practitioner, cardiologist, registered dietitian, and a social worker.

To help your child:

• Go to all medical visits.
• Make sure your child takes any medicines and follows any instructions given by the care team.

You can learn more about muscular dystrophy through your care team and online at:

• Muscular Dystrophy Association  
• Parent Project Muscular Dystrophy (PPMD)