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Duchenne Muscular Dystrophy
WHAT YOU SHOULD KNOW:
- Duchenne muscular dystrophy, also called DMD, is a genetic disease affecting different groups of muscles in the body. A genetic disease is one that you are born with and you may have inherited from your family. DMD causes muscle cells to die, and results in the muscle becoming weak, small, and deformed. DMD usually starts in the lower limbs (legs) and pelvis and moves quickly to other muscles. It is rarely found in girls, and boys are usually the only ones affected.
- DMD is caused by problems with genes and chromosomes. Genes are little pieces of information that tell your body what to do or what to make. Chromosomes are like packages that hold all the genes. With DM, you could have trouble walking, swallowing, and breathing. You may also have learning or thinking problems.
- Tests to diagnose DMD may include blood tests, muscle biopsy, electromyogram, and magnetic resonance imaging of the muscles. There is no treatment for the weakness and wasting of the muscles. You may have other therapies, such as physical therapy, to improve your quality of life. Ask your caregiver for more information about these tests and therapies.
AFTER YOU LEAVE:
Take your medicine as directed.
Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
- You may be taking steroids to improve your energy and strength. This medicine may help a lot but may also have side effects. Make sure you understand why you need steroids. Do not stop taking this medicine without your caregivers OK. Stopping on your own can cause problems.
- You may be given stool softeners to keep you from getting constipated. Constipated means it is hard have a bowel movement (BM). Stool softeners make your BM softer so you do not need to strain when having a BM.
- Do not take any medicines without first talking to your caregiver.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
You and your family will learn about genetic or inherited diseases. This information may help you and your family make important decisions, such as planning a family.
You may need to wear braces on your legs, wrists or neck. Braces will help to keep you in the right position. The braces will also give support so you will be more balanced and not fall when walking. Braces may help you to continue walking longer and delay the start of scoliosis. Scoliosis is when your spine bends in the wrong places. It happens because your muscles are not strong enough to hold the bones of your spine in place.
You may feel short of breath when you are active. The following are breathing exercises that may help you breathe more easily:
- Breathe out with pursed or puckered lips (like playing the trumpet).
- Breathe using your diaphragm. Put one hand on your abdomen and breathe in, causing your hand to move outward or upward. Your lungs will have more room to get bigger and to take in more air.
Occupational therapy (OT) uses work, self-care, and other normal daily activities to help you function better in your daily life. OT helps you develop skills to improve your ability to bathe, dress, cook, eat, and drive. You may learn to use special tools to help you with your daily activities. You may also learn new ways to keep your home or workplace safe.
Caregivers at a pain clinic may help you learn new ways to control your pain. You may learn relaxation or special breathing exercises to help decrease your pain. Caregivers at the clinic will help you find ways to decrease your pain that may work for you.
You may need to see a physical therapist to teach you special exercises. These exercises help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.
- Hydrotherapy is a gentle water exercise program. It may strengthen muscles that are not damaged by DMD. Your physical therapist may encourage you to try hydrotherapy.
- Gentle body massages and stretching may help keep you from getting contractures. A contracture is a shortened muscle that may make it hard to walk or to use your hands.
You may feel safer if you use a 4 prong (pointed) cane or a walker when walking. To keep from falling, remove loose carpeting from the floor. Using chairs with side arms and hard cushions will make it easier to get up or out of a chair. Put grab bars on the walls beside toilets and inside showers and bathtubs. These will help you get up after using the toilet or after bathing. Grab bars will also help to keep you from falling in the shower. You may want to put a shower chair inside the shower.
For support and more information:
Duchenne muscular dystrophy is a life-changing disease for you and your family. Accepting that you or a family member has DMD is hard. You and those close to you may feel angry, depressed, or frightened. These are normal feelings. Talk to your caregivers, family, or friends about your feelings.You may also want to join a muscular dystrophy support group. This is a group of people who have DMD. Contact the following for more information:
- Muscular Dystropy Association
3300 E. Sunrise Drive
Tucson , AZ 85718
Phone: 1- 800 - 344-4863
Web Address: http://www.mdausa.org
- National Society of Genetic Counselors
401 N. Michigan Ave.
Chicago , IL 60611
Phone: 1- 312 - 321-6834
Web Address: www.nsgc.org
CONTACT A CAREGIVER IF:
- You have problems with your bowel movements.
- You have more weakness than usual.
- You have trouble swallowing.
- You have questions or concerns about Duchenne muscular dystrophy, medicines, or care.
SEEK CARE IMMEDIATELY IF:
- You have a fever.
- You are so depressed or feel you cannot cope with your illness.
- You have trouble breathing.
- You have any of the following signs of a heart attack:
- Squeezing, pressure, or pain in your chest that lasts longer than 5 minutes or returns
- Discomfort or pain in your back, neck, jaw, stomach, or arm
- Trouble breathing
- Nausea or vomiting
- Lightheadedness or a sudden cold sweat, especially with chest pain or trouble breathing
Learn more about Duchenne Muscular Dystrophy (Discharge Care)
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