|SSM Cardinal Glennon Children's Medical Center|
The Meaning of Muscular Dystrophy
Over Labor Day, just as you're going back to school, you might see the Muscular Dystrophy Association telethon on TV. Every year on this show, celebrities raise money for research and treatment of muscular dystrophy (MD). You might wonder, "What's this show about and what is muscular dystrophy?" Or maybe you know someone who has MD.
What Is Muscular Dystrophy?
Muscular dystrophy (say: MUS-kyoo-lur DIS-troh-fee) is a disease in which the muscles of the body get weaker and weaker and slowly stop working.
Muscles and membranes need many different kinds of proteins to stay healthy. When you hear the word "protein," you might think of food because foods such as meat and peanut butter contain protein. But we're talking about another kind of protein — the kind your body actually creates. Your genes tell your body how to make the proteins your muscles need. In people with MD, though, these genes have wrong information or leave out important information, so the body can't make these proteins properly.
Without these proteins, the muscles break down and weaken over time. As this happens to muscles, people with MD begin to have problems with the way their bodies work.
Different Types of MD
There are more than 30 types of MD. In some types, muscle problems start when the person is very young. With other types, symptoms of MD start later, sometimes not until the person is a grown-up. This article talks about two types: Duchenne and Becker MD. Generally, only boys get Duchenne MD and Becker MD, but girls are affected by these types in rare cases and can get other forms of MD.
Most kids with MD have Duchenne (say: dew-SHEN) MD. Kids with Duchenne MD look and act just like other kids when they're babies. But when they're between 2 and 6 years old, the muscles in their arms, legs, and pelvis (hips) begin to get weaker. The first signs of weakness might be trouble with running, going up the stairs, or getting up off of the floor. A boy with Duchenne MD will have trouble walking and eventually will stop walking. The boy also might have trouble feeding himself, difficulty breathing, and trouble with his heart.
Becker MD is very similar to Duchenne, except kids with Becker MD may not have problems until much later, when they're teenagers or adults. It takes a long time for their muscles to become weak.
How Does a Kid Get Muscular Dystrophy?
MD is not contagious (say: con-TAY-juss), which means you can't catch it from another person. MD happens because of a problem with a person's genes. Your genes are passed down to you from parents and they contain information about all kinds of stuff. They determine your eye color, hair color, height, and also whether you will have certain medical problems.
What Does MD Feel Like?
When they're young, kids with MD don't look any different from other kids. Later on, they may need wheelchairs or leg braces to get around.
It's hard to imagine what it might feel like if you had trouble getting up from a chair, playing sports, or even walking. The weakness that kids with MD feel in their muscles isn't the same kind of weakness you feel after you run really far and feel like you can't go another step. If you don't have MD, your muscle weakness from exercise will go away after a short time.
But for kids with MD, muscle weakness is always there — when they wake up and when they go to sleep. MD also can affect the brain, which can cause learning problems, but most kids with MD can go to school in a regular classroom with other kids.
What Does the Doctor Do?
When kids begin to have muscle problems and weakness, they go to the doctor, who can do tests to see if a kid has MD. The doctor will examine the weak muscles and test the kid's blood. The doctor can sometimes tell just by a blood test if a kid has Becker or Duchenne MD. Or the doctor might take a small piece of the muscle and look at it under a microscope to help tell whether a kid has MD.
Other tests measure the work that nerves are doing in the muscles and can help doctors figure out if something else is causing the muscle weakness.
Helping Kids With MD
Kids with MD can do a few things to help their muscles. Certain exercises help keep their muscles as strong as possible. Also, special braces help keep the tendons flexible. Tendons are like very strong rubber bands that keep your muscles attached to your bones. If the tendons get tight, the muscles can't work as well, so the braces keep the tendons from tightening up too much.
Kids with MD also do breathing exercises, and some sing or play instruments too. This helps fill their lungs with air and helps prevent them from getting pneumonia (say: new-MO-nyuh), an infection of the lungs.
Some kids with MD take medications to keep their muscles stronger. For some kids, medicines called steroids (say: STER-oyds) may slow down the weakening of the muscles. A side effect of steroids is that they can cause a kid to gain weight.
Many scientists are working on ways to help people with MD. In fact, that Labor Day telethon raises money for research. Some scientists are trying to fix the genes so they will make the right proteins. Others are trying to make chemicals that will act like these proteins. They hope that this will help the muscles work better in people with MD.
Living With MD
Kids with MD may use crutches, walkers, and leg braces to help them walk. They might even use wheelchairs when their muscles get weaker. Some kids have specially trained dogs to open doors for them and carry stuff, like books or toys. But kids with MD like to do the same things as other kids. They like to be outside, play games, and watch TV. Kids who have MD can even go to special summer camps.
Although they need some special attention, kids who have MD want to be treated just like other kids. If you know someone with MD, offer help when the person needs it, but don't make a big deal about the MD. Be a friend and make the most of all the activities you can enjoy together.
Reviewed by: Rupal Christine Gupta, MD