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Becker Muscular Dystrophy
WHAT YOU SHOULD KNOW:
- Becker muscular dystrophy (DIS-trah-fee) or BMD, 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. BMD causes muscle cells to die, and results in the muscle becoming weak, small, and deformed. BMD is similar to Duchenne muscular dystrophy (DMD), except that it develops at a much slower rate. BMD usually starts in the legs and then moves to other muscles. Like DMD, BMD usually occurs in young boys and is rarely found in girls.
- BMD 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 BMD, you could have trouble walking, swallowing, and breathing. You may also have learning or thinking problems.
- Tests to diagnose BMD 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.
CARE AGREEMENT:You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.
There is no cure for Becker muscular dystrophy. Symptoms will get worse later on in life. This may often affect the heart and the lungs and may often be serious and life threatening. Ask your caregiver if you have questions about Becker muscular dystrophy, your medicines, and treatments.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.
This exercise should be done once an hour to keep you from getting a lung infection. Deep breathing opens the tubes going to your lungs. Slowly take a deep breath and hold the breath as long as you can. Then let out your breath. Take 10 deep breaths in a row every hour while awake. You may be asked to use an incentive spirometer to help you with this. Put the plastic piece into your mouth and slowly take a breath as deep and as long as you can. Hold your breath as long as you can. Then, let out your breath.
Eating and swallowing:
Your doctor may ask a swallowing therapist to work with you if you have trouble swallowing. This person has special training to help people learn safer ways to swallow. The swallowing therapist will also help you learn which foods and liquids are safe to eat and drink.
- You may be fed by an IV or a nasogastric (NG) tube if your swallowing problems are very bad. An NG tube is put in through your nose and goes down into your stomach. The tube may also go directly from the outside of your body into your stomach. This is called a gastrostomy tube.
- You may be given thickened liquids to drink because they may be easier for you to swallow. A special powder is used to thicken liquids. You may also be able to eat softer (mashed) foods. You may be able to eat what you usually eat when your swallowing gets better.
This is also called an ECG or EKG. Sticky pads placed on your skin record your heart's electrical activity.
You may have one or more of the following:
- Pain medicine: Caregivers may give you medicine to take away or decrease your pain.
- Do not wait until the pain is severe to ask for your medicine. Tell caregivers if your pain does not decrease. The medicine may not work as well at controlling your pain if you wait too long to take it.
- Pain medicine can make you dizzy or sleepy. Prevent falls by calling a caregiver when you want to get out of bed or if you need help.
- Steroids: This medicine may be given to decrease inflammation.
You may have one or more of the following:
- Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
- Genetic test: This blood test provides genetic information to learn if a hereditary disease is causing your problem.
- Biopsy: Caregivers remove a small piece of tissue from your muscle that is sent to the lab for tests.
- Telemetry is continuous monitoring of your heart rhythm. Sticky pads placed on your skin connect to an EKG machine that records your heart rhythm.
- Electromyography: This is also called an EMG. An EMG is done to test the function of your muscles and the nerves that control them. Electrodes (wires) are placed on the area of muscle being tested. Needles that enter your skin may be attached to the electrodes. The electrical activity of your muscles and nerves is measured by a machine attached to the electrodes. Your muscles are tested at rest and with activity.
- Magnetic resonance imaging: This test is also called an MRI. Pictures of your muscles are taken during this test. Caregivers use these pictures to look for changes in your muscles.
- Pulmonary function tests: Pulmonary function tests (PFTs) help caregivers learn how well your body uses oxygen. You breathe into a mouthpiece connected to a machine. The machine measures how much air you breathe in and out over a certain amount of time. PFTs help your caregivers decide the best treatment for you.
You may need one or more of the following:
- Assistive devices: These are devices that protect and support your body to prevent further injury. These are devices may include braces, crutches, or wheelchairs.
- Genetic counseling: 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.
- Rehabilitation therapy: Physical and occupational therapies may be needed to help you become better able to take care of yourself. Physical therapies are exercises to help make your bones and muscles stronger. Occupational therapy uses work, self-care, and play activities to help you in your daily life.
- Surgery: This may be needed to treat complications from BMD, such as contractures (shortened muscles).
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.