Treatment & Care - Muscular Dystrophy Disease
Treatment and Care
No two people with Duchenne or Becker muscular dystrophy (DBMD) are exactly alike. Therefore, the health issues will be different for each individual. Living a full life with DBMD may involve health care providers who know about different parts of the body all working together to address the needs of each individual. Most people who have Becker muscular dystrophy (BMD) receive treatments similar to those people who have Duchenne muscular dystrophy (DMD).
It is important that a health professional be available to help coordinate care for anyone with muscular dystrophy. Depending on local services, any one of a wide range of health care professionals can serve as a coordinator of clinical care.
These health care professionals can include:
- Neurologists or pediatric neurologists
- Rehabilitation specialists
- Clinical geneticists
- Primary care physicians
The care coordinator should understand muscular dystrophy and the treatments that are needed.
To learn more about the different treatments recommended for DMD, read the DMD Care Considerations.
There is also a family-friendly version of the care guidelines for DMD.
While there are no clinical care guidelines specific to BMD, treatments for the condition are similar to those for DMD.
Care for DMD includes monitoring muscle health. Muscle weakness happens in BMD as well, but usually at a slower rate. People who have DMD experience progressive muscle weakness because they do not have enough dystrophin (a protein) to help keep the muscles strong and healthy. Although every person is different, the muscle weakness in DMD often follows a certain path. The problems caused by muscle weakness can include difficulty learning to crawl and walk, trouble getting up off the floor, trouble climbing stairs, difficulty falling more often than other children, and difficulty with joints locking in one position.
Regular medical check-ups are important to measure how well the muscles are working, and find out if treatments are needed. Treatments can include steroid medications to maintain muscle strength as long as possible; stretching and other exercises specifically designed for people with muscular dystrophy; braces and splints; assistive devices such as wheelchairs, computer technology, and lifting devices to help people with DBMD continue their daily activities; and surgery to prolong walking.
Doctors can use different types of steroid medications to help maintain muscle strength as long as possible. These medications are the only ones currently available that can help slow the muscle damage caused by DBMD. A doctor might prescribe steroids when a person with DBMD is still active, or when he becomes less active. Steroids can have serious side effects. It is important that people with DBMD tell all of their health care providers that they are taking steroids. This is especially important when people who have DBMD are having surgery, have an infection, or are injured.
Muscle weakness, lack of movement, and taking steroid medicines to help maintain muscle strength can cause bones to be weaker among people who have DBMD. Bone problems can include the spine curving to one or both sides, which might cause breathing difficulties; bones becoming weaker and thinner, which increases the chances of a fracture (breaking a bone); and fractures in the legs and spine. Doctors can test for bone strength and spine health, and can prescribe medications and vitamins.
DBMD affects muscles in the heart. As people with the condition grow older, their heart muscles get weaker. The heart muscle becomes weak and might not pump blood into the body properly. The heart also might beat either too fast or too slow. People with DBMD should have their heart checked regularly. Cardiologists—doctors who specialize in caring for the heart—can perform tests to monitor heart health. Medications can be prescribed to prevent or treat heart problems.
As people with DBMD grow older, the muscles that support breathing get weaker. Signs of trouble with breathing can include shortness of breath, fatigue (that is, being very tired all the time), headaches, and trouble sleeping. People with DBMD might have trouble breathing at night and might need to use a machine to help take a deep breath. Over time, they might find it difficult to breathe during the day, and might need a machine to help them both day and night.
As the condition progresses, the lungs become weaker. Preventing lung infections, such as pneumonia, is important for healthy breathing. It is important that people who have DBMD get vaccinations to prevent pneumonia. They also might need manual and mechanically assisted support to stimulate coughing when they have a cold or infection.
Digestion and Nutrition
People with DBMD can have diet, nutrition, and digestion issues. These problems can change over time and include being underweight or overweight, and having swallowing problems, heartburn, and constipation (bowel movements which are infrequent, difficult, or both). Maintaining a well-balanced diet and healthy weight is important. As they get older, people with DBMD can develop swallowing problems that can cause weight loss and unhealthy eating. A doctor might recommend using a feeding tube to assist with proper nutrition.
Emotional and Mental Health
People with DBMD might have issues that affect how they interact with others. These issues might be caused by the condition, they might be side effects of using medications to treat health issues, or they might be a result of the emotional and mental health challenges that accompany living with muscular dystrophy. Mental and emotional issues should be addressed by a health care professional who is an expert in these conditions, such as a psychologist, psychiatrist, or social worker.
Treatment of emotional and mental health might include encouraging independence and involvement in decision making; receiving help in developing social and learning skills; receiving psychotherapy, such as individual or family therapy; or using medications for treatments. There are organizations that provide support for people and families affected by DBMD. Some offer programs such as sports teams and summer camps for people with special needs. People who have DBMD also might enjoy engaging in equine and water therapy, participating in art activities, and communicating with others on the Internet.