Muscular Dystrophy

Helping Kids Live as Independently as Possible

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:

pulmonology — to help with any breathing problems
genetics — to help figure out the genetic cause of conditions
physical medicine and rehabilitation medicine — to help treat muscle function, and evaluate and treat spasticity (muscle stiffness or spasms)
gastroenterology — to help with any digestive issues
pain management — to help manage any pain
physical therapy and occupational therapy — to help kids function and live as independently as possible
nutrition — to make sure kids get the nutrients they need
psychology — to help kids cope
speech and language therapy — to help with any speech problems
orthotic services, including bracing — to help kids move
assistive technology — to help kids get around and communicate

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.

Delaware Valley/Greater Philadelphia

We offer complete muscular dystrophy care for children at Nemours/Alfred I. duPont Hospital for Children (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

Central Florida

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

Northeast Florida

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

Nemours muscular dystrophy specialists available to provide pediatric consultation in the Wolfson emergency department if your child ever needs it
advanced diagnostic imaging testing at the Walter and Michelle Stys Neuroscience Institute , a five-bed facility within Wolfson
close academic and clinical ties with the University of Florida College of Medicine–Jacksonville and Mayo Clinic Florida , to train the next generation of pediatric experts in neuromuscular disorders
Ronald McDonald House across the street, for an affordable home away from home during long hospital stays