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.
Muscular dystrophy is a genetic muscle disease. It comes in many forms and can affect adults and children. Though there's no known cure for muscular dystrophy, specialists at Nemours help kids improve their muscle and joint function in order to slow the condition's progress.
Our muscular dystrophy programs are certified and approved by the Muscular Dystrophy Association (MDA). With access to the most advanced technologies, therapies and medications for muscular dystrophy 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 every child with muscular dystrophy the best possible care and quality of life.
Hours: Monday–Friday, 8 a.m. to 5 p.m.
For Appointments: (407) 650-7715
- 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
- any forms required for school, camp, sports, etc.
- a list of prior immunizations
Bring these forms for your first appointment:
- Patient Presents Without Legal Guardian (PDF)
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Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
The muscular dystrophy program at Nemours Children’s Hospital is the only one in Central Florida that’s certified and approved by the Muscular Dystrophy Association (MDA).
If your child has muscular dystrophy, or if your doctor believes your child has symptoms of muscular dystrophy or other neuromuscular disorders, we’re here to help. Our specialists have the knowledge, experience and access to the latest technology to diagnose and treat congenital muscular dystrophy, Duchenne muscular dystrophy and all other forms of this disorder.
What’s more, our care team will be with you every step of the way, doing whatever it takes to help your child preserve as much muscle function as possible, and to help your family enjoy the best possible quality of life.
At Nemours, we apply the latest advances in biomedical research to improve the lives of kids with muscular dystrophy (and other neuromuscular disorders). Our Central Florida team of neuromuscular experts can evaluate and treat all types of muscular dystrophy, including:
- Becker muscular dystrophy
- congenital muscular dystrophy
- distal muscular dystrophy
- Duchenne muscular dystrophy
- Emery-Dreifuss muscular dystrophy
- facioscapulohumeral muscular dystrophy
- limb-girdle muscular dystrophy
- myotonic dystrophy
- ocular muscular dystrophy
- oculopharyngeal muscular dystrophy
Under the Nemours Children’s Hospital MDA-approved program, we also evaluate and treat children with other neuromuscular disorders, including:
- congenital, inflammatory and metabolic myopathies
- myotonic disorders, including myotonic dystrophy types I and II, myotonia
- congenital and paramyotonia congenita
- neuromuscular junction disorders, including myasthenia gravis, congenital myesthenic syndrome and botulism
- peripheral nerve disorders, including Charcot-Marie-Tooth (CMT) disease and chronic inflammatory demyelinating polyneuropathy (CIDP)
- Friedrich and other kinds of ataxia
- spinal muscular atrophy (SMA)
No matter what kind of neuromuscular disorder your child may have, when you come to Nemours Children’s Hospital you’ll find caring, compassionate people with advanced medical expertise in a supportive, family-friendly environment.
It takes a whole team of pediatric professionals working together to care for a child with muscular dystrophy or other neuromuscular disorder. At Nemours Children’s Hospital, your child will have the benefit of a medical team that includes some of the most accomplished pediatric specialists in the Central Florida region, including:
- behavioral health professionals (psychologists, psychiatrists and mental health experts) to help your child and family cope with a chronic condition
- cardiologists to help your child maintain heart health
- gastroenterologists to help with digestive issues
- geneticists to help families make informed decisions
- neurologists to help manage symptoms as your child’s neuromuscular disorder progresses
- nutritionists to make sure your child gets the nutrition needed
- orthopedists and orthopedic surgeons to help with issues affecting bones and joints
- physical medicine and rehabilitation specialists to help your child live as independently as possible
- pulmonologists to provide ongoing breathing assistance
To help children with muscular dystrophy experience and do more — and more independently — we offer highly specialized services that include:
- assistive technology experts to help with mobility, and devices that can help your child function independently
- occupational, physical and speech and language therapists to help your child remain strong, communicate and manage the activities of daily life
- pain management specialists to help keep your child comfortable
Many kids with muscular dystrophy develop normally in their first few years of life, but common symptoms of muscular dystrophy appear in time, such as:
- difficulty walking (stumbling, waddling, problems going up stairs)
- toe walking (walking on the toes without the heels hitting the floor)
- struggle with daily activities (getting up from a sitting position, pushing things)
- facial weakness (difficulty closing eyes, whistling, puffing out cheeks)
- gradual muscle weakness (problems lifting objects or raising arms above the head, leg and pelvic weakness)
At Nemours Children’s Hospital, our world-class specialists are also among the country’s leading researchers into the causes and treatments for muscular dystrophy and other neuromuscular disorders. With a wide range of clinical trials and other studies in progress, their research has the potential to improve care for children and families worldwide who are affected by muscular dystrophy and other neuromuscular disorders. Even those who never enter our doors.
A Hospital Designed by Families, for Families
At Nemours Children’s Hospital, family-centered care is at the heart of everything we do. In fact, families helped shape the unique amenities and convenient services that make our hospital like no other in the region.
You’ll feel right at home in one of our private patient rooms designed with input from families who understand what it’s like to have a child in the hospital.
Our large, comfortable, single-patient rooms have sleeping accommodations for parents, a private bathroom, wireless Internet access, connections for DVD players and game systems, and flat-screen TVs.
Other in-room features include:
- full floor-to-ceiling windows for natural light
- LED lighting controls for patients to “paint” the room with color
- refrigerator for family meals and snacks
- wardrobe storage for personal items and a hotel-style safe
- GetWellNetwork interactive television (uniquely based on your child’s age, medical condition and more) so your child can watch TV, surf the Web, check e-mail, play music and games and learn about your Nemours health care team
We have many more comforts and amenities such as:
- complimentary valet and parking
- kid-friendly commons areas for siblings
- cafe and coffee shop
- gift shop
- nondenominational chapel
- concierge services
If your child needs medical imaging, we offer some of the area’s most advanced pediatric radiology services here on campus at Nemours Children’s Hospital.
Our unique services include:
- interventional radiology: Our team of experts uses image guidance to diagnose and treat diseases and tumors throughout the body. Certain conditions that previously required open surgery can now be treated by Nemours pediatric interventional radiologists. We are very fortunate to have the only dual-trained pediatric diagnostic and interventional radiologist in the state.
- neuroradiological or cardiovascular imaging, and fetal MRI (magnetic resonance imaging): Our subspecialty-trained pediatric radiologists see children with complex conditions who require this highly specialized imaging.
- Central Florida’s only 256-slice Brilliance iCT Scanner: We are one of only a handful of children’s hospitals in the country to have this latest generation CAT (or CT) scanner that scans faster than most machines and produces excellent images in a much shorter time with much less radiation exposure for the child.
Our team of board-certified pediatric radiologists and pediatric radiologic technologists are experts in the safe medical imaging of children of every age, even newborns.
We have also pledged our commitment to the “Image Gently” campaign of the Alliance for Radiation Safety in Pediatric Imaging, which is increasing awareness of the opportunities to promote radiation protection in the imaging of children.
If your child has a complex or chronic condition, we encourage you to take advantage of KidsTRACK, a unique service of Nemours Children’s Hospital. Located on the first floor of our hospital, KidsTRACK is designed to help families by providing expert assistance and information on all aspects of your child’s care, even before you leave our hospital or clinic.
A KidsTRACK care coordinator is available during every step of diagnosis, treatment, and healing — helping your family make a smooth transition from Nemours Children's Hospital to home. Your coordinator works alongside the nursing /case managers in our subspecialty areas and acts as a single point of contact connecting you to medical and community resources. Simply ask your physician for a referral to KidsTRACK or call (407) 650-7715.