MyNemours Sign-InMuscular 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.
Muscular Dystrophy
Helping Kids Live as Independently as Possible
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 shrinking muscles and weakness in the lower arms and legs (the distal muscles) that may gradually spread to other parts of the body
- 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 — shrinking muscles and muscle weakness 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 see 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
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/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)
- 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 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
Patient Stories
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.
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.