Muscular Dystrophy

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Muscular Dystrophy

Helping Kids Live as Independently as Possible

Child with muscular dystrophy in a wheelchair at the beach, smiling.

Muscular dystrophy (MD) is a genetic disorder that makes the muscles get weaker over time. There's no known cure, but researchers are learning more about how to prevent and treat it. At Nemours, our team of neurologists and other specialists has the training and expertise to help children with muscular dystrophy maintain and even improve their muscle and joint function. Our goals are to manage your child’s muscular dystrophy symptoms as they grow, and help your child live as independently and actively as possible.

Learn More About Muscular Dystrophy

Muscular Dystrophy Conditions We Treat

There are multiple types of muscular dystrophy. Some cause more problems than others, including trouble walking, sitting upright, breathing easily, and controlling arm and hand movements. Nemours’ experts in neuromuscular disorders (problems with the nerves and muscles) provide compassionate, family-friendly care for kids with all types of muscular dystrophy:

  • Becker muscular dystrophy — begins during the teen years with muscle weakness in the pelvis, then moves into the shoulders and back
  • congenital muscular dystrophy — muscle weakness that’s often diagnosed at or near birth
  • distal muscular dystrophy — includes atrophy or reduced size and weakness in the muscles in the forearm and lower part of the legs
  • Duchenne muscular dystrophy — the most common and severe form, when the muscles break down and a child becomes weaker, usually starting in the pelvic muscles around age 5
  • Emery-Dreifuss muscular dystrophy — atrophy in the shoulders, upper arms and calves, as well as stiff joints in the elbows, neck and heels
  • facioscapulohumeral muscular dystrophy — symptoms first affect the muscles of the face, shoulders and back
  • limb-girdle muscular dystrophy — mainly affects the pelvic, shoulder and back muscles
  • myotonic dystrophy (also known as “Steinert's disease”) — the most common adult form of MD, although half are diagnosed in kids and teens, with muscles that keep contracting (tightening)
  • ocular (or oculopharyngeal) muscular dystrophy — affects the muscles of the upper eyelids and the throat, most often noticed after age 40 (but can be found in kids too)

We also diagnose and treat kids with all kinds of neuromuscular disorders.

Muscular Dystrophy Services We Offer

At Nemours we provide a complete range of diagnostic and treatment options for children with muscular dystrophy. Our highly specialized services vary depending on the location you visit and the doctors your child sees. You’ll get expert assessment and treatment led by a team of specialists in neurology and orthopedics.

Our services may also include: 

Why Choose Us for Muscular Dystrophy Care

At Nemours, your child will get muscular dystrophy care that’s among the best in the country. We use the most advanced technologies, therapies and medications available to treat every child as we would our own. And our doctors and researchers are always looking for new ways to make life easier for kids with muscular dystrophy and other neuromuscular disorders. 

Regional Muscular Dystrophy Highlights

Services, programs and care teams differ at each location. Call for details.

We offer complete muscular dystrophy care for children at Nemours Children’s Hospital, Delaware (Wilmington, Del.).

  • multispecialty program includes nationally recognized experts from neurology and orthopedics
  • the only muscular dystrophy program of its kind in Delaware, certified and approved by the Muscular Dystrophy Association (MDA)
  • Parent Project Muscular Dystrophy (PPMD) Certified Duchenne Care Center
  • Muscle Respiratory Care Clinic to evaluate, diagnose and treat breathing problems that can happen in kids with neuromuscular disorders
  • life-changing robotic devices and therapies developed by our researchers, like the Wilmington Robotic EXoskeleton (WREX), which helps kids with weakened muscles move their arms
  • academic medical center, where our neuromuscular experts teach the next generation of specialists
  • Ronald McDonald House of Delaware , right across from our campus, for an affordable home away from home during long hospital stays

We offer complete muscular dystrophy care for children at Nemours Children’s Hospital (Orlando).

  • the only muscular dystrophy program in Central Florida that’s certified and approved by the Muscular Dystrophy Association (MDA)
  • medical team that includes one of the country’s leading experts on muscular dystrophy and other neuromuscular disorders
  • one of the only pediatric pain management programs in the country, helping kids with acute (temporary) or chronic (ongoing) pain
  • Ronald McDonald House on campus, for an affordable home away from home during long hospital stays

We offer complete muscular dystrophy care for children Nemours Children's Health, Jacksonville, working with Wolfson Children’s Hospital.

Patient Stories

Liam tells his muscular dystrophy story.

Sometimes the best support and peace of mind comes from families who’ve been there. Meet some of the inspiring kids we’ve been honored to treat.

See Patient Stories »

Research & Clinical Trials

At Nemours, we’re actively researching new approaches for childhood disease prevention, diagnosis and treatment.

KidsHealth Library

Learn more about your child’s medical condition from the experts at Nemours’ KidsHealth.