Muscular dystrophy is a group of genetic diseases that cause progressive muscle weakening and degeneration. The primary muscular dystrophy symptom is muscle wasting (a decrease in muscle size and strength).
MDA Care Center
Rush is proud to be one of approximately 150 Muscular Dystrophy Association (MDA) Care Centers in the U.S., helping people with muscular dystrophy lead fuller, more active lives.
Our MDA Care Center clinic offers one-stop shopping for those who may require more complex care. Patients can be seen by all of the specialists involved in their care in one visit and one place. They can also access vital support services and resources.
Types of muscular dystrophy
There are nine major groupings of muscular dystrophy. The groupings are characterized by the location and extent of muscle weakness (myopathy) and the genetic abnormality 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 muscular dystrophy
Muscular dystrophy: what you should know
- Aggressive treatment involving many specialties is effective at extending survival, particularly for children born with Duchenne muscular dystrophy.
- Many muscular dystrophy patients are at greater risk of developing scoliosis, breathing problems, respiratory infection and swallowing difficulty (dysphagia).
- Women with a family history of muscular dystrophy who wish to become pregnant may opt to undergo genetic testing. This may help determine whether they are carriers of the gene that causes the disease.
How can I get help for muscular dystrophy?
- Neuromuscular experts at Rush can help you obtain an accurate diagnosis of which type of muscular dystrophy you have so you can begin treatment as soon as possible.
- Diagnostic tests for muscular dystrophy may include the following:
Care for muscular dystrophy at Rush
Comprehensive muscular dystrophy care requires a team of experts. Your team at Rush will include many of the following specialists:
- Neuromuscular physicians
- Pediatric neurologist
- Orthopedic surgeon
- Orthotics specialist
- Mobility specialist (including help finding the proper fit for a wheelchair)
- Occupational therapists and physical therapists
- Social worker
A full range of treatments
Muscular dystrophy cannot currently be cured. Treatment at Rush focuses on providing the care and support you need to lead a more active life.
This includes care that is aimed at preventing complications from muscle wasting, respiratory problems and reduced mobility. All treatments are thoughtfully planned and tightly coordinated by your care team.
Your care at Rush may involve some or all of the following treatments:
- Medications: Your neuromuscular team can offer the latest medications to treat muscle weakness, heart problems and other common complications.
- Assisted ventilation: Due to muscle weakness in the lungs, many patients require some form of assisted ventilation to address breathing difficulty (dyspnea). Patients with Duchenne muscular dystrophy, in particular, may require nighttime ventilation due to sleep apnea.
Physical and occupational therapy: This therapy 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: Some patients benefit from muscle-release surgery (sometimes called heel cord release or Achilles tendon release) to treat contractures and improve mobility. In addition, patients with severe curvatures of the spine may require scoliosis surgery to improve breathing.
MDA Care Center clinic
Some patients with more complex care needs may be seen through Rush's multidsciplinary MDA Care Center clinic. Here, a team of experts focus on improving patients' lives with customized treatment plans, clinical trials, and access to the national MDA Resource Center, which offers one-on-one counsel, support services, community resources and more.
Why choose Rush for muscular dystrophy care
- MDA Care Center. As an MDA Care Center, Rush offers advanced, personalized care by a team of compassionate professionals who are dedicated to helping families affected by muscular dystrophy.
- Expertise you can trust. Neuromuscular physicians have conducted thousands of muscle and nerve tests on adults, children and infants. As a result, they can detect subtle abnormalities in muscles and nerves and arrive at a diagnosis with great accuracy.
- Leaders in spinal deformity care. Scoliosis specialists at Rush have more than 40 years treating children and adults with scoliosis and other spinal deformities.