Muscular Dystrophy

girl with multiple dystrophy in wheelchair

At Nemours, our neurology experts help children with muscular dystrophy (including Becker muscular dystrophy, congenital muscular dystrophy and other neuromuscular disorders) live as independently and actively as possible. Because every kid needs a chance to just be a kid.

 
Learn More About Nemours Muscular Dystrophy Programs

Our muscular dystrophy programs are certified and approved by the Muscular Dystrophy Association (MDA). With access to the most advanced technologies, therapies and medications available, your child will receive comprehensive care delivered by compassionate Nemours doctors, nurses and therapists who treat every child as they would their own.

Nemours muscular dystrophy treatment programs use a coordinated approach to help the best ways to treat your child’s individual condition.

That means our team includes experts in:
  • orthopedics (bones and joints)
  • pulmonology (lungs)
  • neurology (brain, spine and nerves)
  • genetics (DNA that determines heredity)
  • physical and occupational therapy (improving muscle performance and motor skills)
  • cardiology (heart)
  • nutrition (help for kids with trouble eating)
  • psychology (behavioral and mental health)

Together, we work as a team to give your child the best possible care and quality of life.

Jacksonville

Nemours Children's Clinic, Jacksonville

807 Children’s Way
Jacksonville, FL 32207
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For Appointments: (904) 697-3600

Hours: Monday–Friday, 8 a.m. to 5 p.m.
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What to Bring
  • photo ID
  • medical and pharmacy insurance cards
  • preferred pharmacy name and phone number
  • names and dosage of all medications, including over-the-counter medication, your child is currently taking
  • guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
New Patients

Bring these forms for your first appointment:

Returning Patients
 
Forms & Resources
New Patient Forms
Returning Patient Forms
Resources for Patients & Families
Support Services
  • Ronald McDonald House of Jacksonville: a safe, free, family-centered home away from home when your child is sick and needs to be hospitalized
  • CaringBridge: visit this free site offering support and communication to help your family through your child's medical journey.

We partner seamlessly with specialists from Wolfson Children’s Hospital to deliver quality care for kids with muscular dystrophy and other neuromuscular disorders. This unique relationship allows our Nemours muscular dystrophy specialists to provide pediatric consultation in the emergency department, and in the hospital or outpatient surgery center.

As part of the Baptist Health System, Wolfson Children’s Hospital has a long-standing reputation for excellence in children’s health care. This collaboration of expertise and technology benefits every child in the area. It’s a connection that’s both professional, thanks to a skyway joining Nemours Children’s Clinic to the new Wolfson Children's Hospital center.

 
Collaborating With Wolfson Children’s Hospital

The Muscular Dystrophy Program at Nemours Children’s Clinic, Jacksonville, approved by the Muscular Dystrophy Association (MDA), brings together two important elements to care for kids who have neuromuscular diseases like MD:

  • the latest, most promising, most advanced techniques, medications and therapies
  • a caring, compassionate family-centered approach, focused on treating every child in our care as our own

Our Nemours specialists, nurses, and support people know it’s frightening to face MD. And under our care, neither your child nor your family will face it alone. Our staff will be with you every step of the way, doing whatever it takes to help your child preserve as much muscle functioning as possible, for as long as possible.

 
Types of Muscular Dystrophy We Treat

Muscular dystrophy comes in many forms, each with its own symptoms and challenges.

We care for kids with:
  • Duchenne muscular dystrophy
  • Becker muscular dystrophy
  • Myotonic dystrophy
  • Limb-girdle muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Rarer forms of MD, such as distal, ocular, oculopharyngeal, and Emery-Dreifuss

No matter what kind of neuromuscular disease your child has, we have one simple goal: To give your child the best chance to be a child.

 
Services to Help Children With Muscular Dystrophy Live Better

To help your child experience and do more independently, we offer highly specialized services that include:

 
Expanded, More Convenient Neuromuscular Testing

Nemours Children’s Clinic, Jacksonville offers newly expanded testing facilities for children with neuromuscular disorders like MD. Now it’s easier than ever to get important tests that measure electrical messages in the nerves and muscles.

Among the tests available:
  • Electromyogram (EMG)
  • Nerve Conduction Studies
  • Electroencephalogram (EEG)

The tests take about 30 to 60 minutes with no restrictions afterward. Although each of these tests is different, they all measure electrical activity, and provide information doctors need to evaluate your child and select the most promising treatment available.