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Muscular dystrophy (MD) is a genetic disorder that weakens the muscles that help the body move. People with MD have incorrect or missing information in their genes, which prevents them from making the proteins they need for healthy muscles. Because MD is genetic, people are born with the problem. It is not contagious and you cannot catch it from someone who has it.
MD weakens muscles over time, so children, teens, and adults who have the disease can gradually lose the ability to do the things most people take for granted, like walking or sitting up. Someone with MD might start having muscle problems as a baby or their symptoms might start later. Some people even develop MD as adults.
How is MD treated?
There is no cure for MD, but doctors and scientists are working hard to find one. Some scientists are trying to fix the defective genes that lead to MD so they will make the right proteins. Others are trying to make chemicals that will act like these proteins in the body. They hope that this will help the muscles to work properly in people with MD. Doctors are also dedicated to finding the best ways to treat the symptoms of MD so that kids, teens, and adults with the disease can live as comfortably and happily as possible.
Teens with MD can do some things to help their muscles. Certain exercises and physical therapy can help them avoid contractures, a stiffening of the muscles near the joints that can make it harder to move and can lock the joints in painful positions. Often, teens are fitted with special braces to ensure flexible joints and tendons (the strong, rubber band-like tissues that attach muscles to bones). Surgery is sometimes used to reduce pain and increase movement from contractures.
Because we rely on certain muscles to breathe, some teens with MD need respiratory aids, such as a ventilator, to help them breathe. Teens with MD also might need to be treated for problems like scoliosis, which can be caused by weakened muscles or muscles that are contracting or pulling too tightly.
For some types of MD, medication can help. Guys with Duchenne MD may be helped by a medicine called prednisone, and teens with myotonic MD might use mexilitine to relax muscles. It's also important that people with heart problems caused by muscular dystrophy be monitored by a heart specialist.
What's it like for teens with MD?
Teens have different experiences depending on the type of MD. One person might have weakened shoulder muscles and not be able to raise a hand in class. Someone might be unable to smile because of weak facial muscles. Another person might have weak muscles in the pelvis or legs, making it hard to walk from class to class. In some cases, you might not even be able to tell that a teen has MD.
For teens with MD, it can be hard to come to terms with the disease, especially because it gradually gets worse. For example, when someone who walks to class must start using a wheelchair in school, it can be a difficult adjustment. Support from doctors, family, and friends can make it easier to deal with MD. Changes like wider doorways at home and school can make it easier for teens with MD to do many of the things they enjoy.
If you know someone who has MD, there's a lot you can do to offer help and support. For example, some people with MD may need help getting books out during class or rides to and from events.
Often, people with illnesses that gradually get worse over time can start to feel cut off from friends, especially as their friends may be going out and doing more things while they feel like they're becoming more housebound. Try planning activities that include a friend, brother, or sister with MD, such as playing video games or watching movies at his or her home. Your friend or sibling will always be the same person — just more limited in movement
For more information please contact: www.mdsa.org.za or call 011 472 9703 or email national@mdsa.org.za
(Press release, Muscular Dystrophy South Africa, August 2012)
