Muscular Dystrophy

Muscular dystrophy is a group of genetic diseases that causes muscle weakening and degeneration that becomes worse over time.

The main symptom of muscular dystrophy is a decrease in muscle size and strength (known as muscle wasting).

Rush MDA Care Center

Rush University Medical Center is a Muscular Dystrophy Association (MDA) Care Center. Our MDA Care Center offers care for people whose muscular dystrophy requires more complex care. Patients can be seen by all of the specialists involved in their care in one visit and one place.

Aggressive treatment by many specialties (known as multidisciplinary care) is effective at helping you live longer with muscular dystrophy. Multidisciplinary care is effective for children born with Duchenne muscular dystrophy and for adults with other types of muscular dystrophy.

Types of Muscular Dystrophy

The major groupings of muscular dystrophy are characterized by the following:

• Location and amount of muscle weakness (myopathy)
• Genetic issue that caused the disease

They include some of the following:

• Becker muscular dystrophy
• Congenital muscular dystrophy
• Duchenne muscular dystrophy
• Facioscapulohumeral muscular dystrophy
• Limb girdle muscular dystrophy
• Myotonic dystrophy

Muscular Dystrophy Diagnosis at Rush

Neuromuscular disease experts at Rush can help diagnose whether you have muscular dystrophy and, if so, which type you have. This diagnosis can help quickly and accurately determine what treatments or disease management strategies may help.

Diagnostic tests for muscular dystrophy may include the following:

• Electromyography (EMG) and nerve conduction study tests the function of nerves, muscles and nerve-muscle junctions
• Genetic testing
• Muscle biopsy distinguishes between muscular dystrophy and other muscle diseases

Muscular Dystrophy Treatment at Rush

Currently there is no cure for muscular dystrophy. However, new treatments can help improve symptoms for certain types of the disease.

 Your treatment at Rush focuses on providing the care you need to lead a more active life. Our goal is to prevent complications from muscle wasting, respiratory problems and reduced mobility.

Medication Management

Your neuromuscular team can offer the latest medications to treat muscle weakness, heart problems and other common complications.

Complications of Muscular Dystrophy

Because of muscle wasting, many people with muscular dystrophy are at greater risk of developing the following:

• Scoliosis
• Breathing problems
• Respiratory infection
• Difficulty swallowing (dysphagia)
• Heart issues

To address these complications, your treatment may involve the following:

• Assisted ventilation: Some forms of muscular dystrophy cause weakness in the muscles you use to breathe. For that reason, you may need some form of assisted ventilation (which you'll typically start using at night). Assisted ventilation can also help with sleep apnea, which people with muscular dystrophy have an increased risk of developing.
• Physical and occupational therapy: Physical rehabilitation can help you maintain muscle function and prevent joint stiffening (contractures); in addition, your therapists can help with the following:
  • Assess your function with orthotics (braces) and help you improve it, if needed
  • Provide guidance on safety issues, such as balance training and your risk for falls
  • Help you find the best assistive device for your needs (for example, a cane versus a walker)
• Surgery: You may benefit from muscle-release surgery (sometimes called heel cord release or Achilles tendon release) to treat contractures and improve mobility. In addition, if you have a severe curvature of the spine, you may require scoliosis surgery to improve breathing.

Supportive Care

As part of the care team at our Chicago location, we offer additional support that includes:

• Social worker to help connect you to resources in your community or address other issues.
• Nutritionist to create a diet plan to address any issues you may have with swallowing or maintaining an appropriate weight

Genetic Testing

Our team includes a genetic counselor. If you have a personal or family history of muscular dystrophy and want to start a family, you may want to speak to your Rush provider about genetic counseling and testing. This can help you determine the likelihood of passing on the gene that causes muscular dystrophy.

Rush Excellence in Muscular Dystrophy Care

• MDA Care Center: At our MDA Care Center in Chicago, we offer multidisciplinary care for people whose muscular dystrophy requires complex services. This allows you to see all the specialists you need in one place. They also connect you to the national MDA Resource Center, which offers one-on-one counseling, support services, community resources and more.
• Neurological care across the system: We know that mobility issues may make it hard to visit our downtown location on a regular basis. Our neuromuscular specialists can also meet with you in Oak Brook. And we have general neurologists in Aurora, Oak Park and Chicago's South Loop who can meet with you initially to ensure you have an accurate diagnosis.
• Muscular dystrophy in children: Our pediatric neurologist offers care for Duchenne muscular dystrophy and other childhood muscular dystrophies at multiple locations, including downtown Chicago and Aurora/Fox Valley.
• Muscular dystrophy research: We offer clinical trials for certain types of muscular dystrophy, including Duchenne muscular dystrophy. Clinical trials help us further our understanding of the disease. And they offer you potential new treatment opportunities that are not otherwise available.
• Nationally recognized expertise: Rush University Medical Center is consistently ranked among the best in the nation for neurology and neurosurgery.