Support for Muscular Dystrophy

Muscular dystrophy is a lifelong condition that requires ongoing follow-up care with a doctor who specializes in neuromuscular disorders and conditions. NYU Langone offers a variety of support services for people with muscular dystrophy.

For children with muscular dystrophy, the Sala Institute for Child and Family Centered Care, part of Hassenfeld Children’s Hospital at NYU Langone, provides resources for children and their families throughout diagnosis and treatment. These include child life services, social work, and other health and support services.

Neuromuscular Disorders Center

NYU Langone specialists offer long-term comprehensive care for children and adults with neuromuscular diseases, including muscular dystrophy, at our Neuromuscular Disorders Center and the Elly Hammerman Center for the Treatment of Neuromuscular Disorders at the Center for Children, part of Hassenfeld Children’s Hospital.

Our Neuromuscular Disorders Center is sponsored by the Muscular Dystrophy Association and is one of only 250 in the nation that offers evaluation, diagnosis, medication management, and physical, occupational, and speech therapy on an outpatient basis. The clinic’s physicians, physical and occupational therapists, nutritionists, and social workers assist people with muscular dystrophy and their families throughout diagnosis and treatment.

NYU Langone doctors specializing in rehabilitation medicine, neurology, pulmonology, respiratory care, cardiology, psychology, gastrointestinal issues, orthopedics, and genetic counseling work together as a team to provide care.

Breathing Assistance

People with certain types of muscular dystrophy may require breathing assistance as the condition progresses. The muscles involved in breathing may weaken gradually, and many people may not realize their respiratory strength has diminished until they find it difficult to cough, or when they develop pneumonia or other lung infections more frequently.

Some people with muscular dystrophy may also develop sleep apnea, a breathing disorder that occurs during sleep.

Regular visits to a respiratory specialist can help prevent breathing problems before they occur. The experts at NYU Langone can recommend ways to improve and maintain your breathing ability through the use of respiratory aids or exercises. Some people need to use a device to improve oxygen delivery during sleep. Others require the continual use of a ventilator, which is a device that provides air to the lungs, in order to breathe.

Our doctors and specialists are skilled in finding the appropriate equipment and therapies for you. They provide training and support throughout treatment.

NYU Langone doctors also recommend that people with muscular dystrophy keep up to date on vaccinations, including the flu vaccine, in order to avoid infections.

Genetic Counseling

NYU Langone offers genetic testing and counseling for people with muscular dystrophy and their families. During genetic counseling, you and your family members are educated about the consequences and nature of muscular dystrophy, the probability of your children having this condition, and your options in terms of testing, management, and family planning.

Genetic testing is voluntary. Because testing has benefits as well as limitations and risks, the decision whether to participate in testing is personal and complex.

The results of genetic testing can impact the decisions you make about important life issues, from family planning to obtaining insurance coverage. Our genetic counselors provide you with information about the benefits and drawbacks of testing and discuss the potential social and emotional impact of testing.

Cardiac Care

Cardiac care, which focuses on the health of your heart, is a key component to managing certain types of muscular dystrophy. Because the heart is a muscle, it can be weakened by muscular dystrophy, leading to different types of heart problems as the disease progresses.

For example, people with Emery–Dreifuss muscular dystrophy and myotonic muscular dystrophy may have an irregular heartbeat called arrhythmia.

People with Duchenne muscular dystrophy or Becker muscular dystrophy may develop a condition that prevents the heart from pumping blood efficiently, called cardiomyopathy. Arrhythmia, fatigue, shortness of breath, and swelling of the legs and feet are symptoms of cardiomyopathy that can worsen rapidly and become life threatening.

To avoid these complications, some people with muscular dystrophy may need to take medications to help the heart pump more efficiently or to manage arrhythmia. A pacemaker or implantable cardioverter defibrillator may need to be surgically implanted.

The cardiologists at NYU Langone are experts at developing a cardiac care plan to keep the heart healthy in people with all types of muscular dystrophy. They can recommend ways to prevent cardiac complications.

Nutritional Support

Movement can be difficult for people with muscular dystrophy. Some people with the condition become sedentary, which can lead to obesity. This is often true for children and young adults with muscular dystrophy.

Later, as the disease progresses, more calories are needed to prevent further weakening of the muscles.

Registered dietitians at NYU Langone provide nutritional counseling to help people with muscular dystrophy maintain a healthy weight.

Social Work Support

Social workers at NYU Langone are available to help families cope with the stress of receiving a muscular dystrophy diagnosis and the demands of coordinating ongoing care.

Our social workers can suggest support groups for people with muscular dystrophy and their families. They can also introduce them to nationally recognized foundations that can provide additional support and guidance for managing care and understanding the effects of the condition.