Spondyloepiphyseal dysplasias (SEDs) are disorders that involve both the spine and the ends of long bones. Nemours is world-renowned for diagnosing and treating skeletal dysplasias, including all types of SED. We’re here to answer your questions, ease your concerns, and build a personalized care plan to help your child live life to the fullest.
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Spondyloepiphyseal Dysplasia
Internationally Recognized Treatment for SED
Services We Offer for Spondyloepiphyseal Dysplasia
Nemours offers a full range of care for newborns, kids and teens with SED. Services vary by specialist and location, but may include:
- advanced medical imaging to monitor changes in the bones, joints and organs
- congenital heart defect expertise that includes heart surgery
- fetal diagnostic testing in our perinatology and fetal medicine centers to help us diagnose and make a treatment plan for when your baby’s born
- gastroenterology helps with nutrition support
- genetic testing to assist with diagnosis and family planning
- neonatal care for coordinated, critical care immediately after birth
- orthopedic care from one of the largest and most widely respected pediatric programs in the world, providing innovative work in spine surgery and limb realignment
- orthotics and prosthetics that can be custom-made right in the hospital
- otolaryngology (or “ENT”) expertise for ear infections and early audiology needs due to structural differences
- pain management programs just for kids to help with symptoms or post-surgery pain
- physical medicine and rehabilitation offer physical, occupational and speech therapy
- plastic surgery for reconstruction needed for function and appearance
- psychology and social work to help kids emotionally cope with their condition
- pulmonology care for newborns with respiratory needs and ongoing infections as kids grow
- transition of care when it’s time for adult care and services
Why Choose Us for Spondyloepiphyseal Dysplasia Diagnosis and Care
Nemours Children’s Health System has been recognized for delivering advanced pediatric orthopedic care since 1940. Families from all over the world travel to see our skeletal dysplasia experts. Our genetics doctors have the experience and training to diagnose even the rarest types of skeletal dysplasia, like spondyloepiphyseal dysplasia (SED). Once we’ve identified your child’s condition, our care teams work together to create a personalized treatment plan that meets your family’s needs.
Treatment is led by our world-renowned pediatric orthopedic experts, including Dr. William Mackenzie. Since skeletal dysplasia can evolve and change with time, Nemours has established one of the world’s top pediatric imaging programs to track and measure changes to children’s bodies.
Our care navigators coordinate appointments since most kids need to see different specialists, and some may need multiple surgeries. We also help kids with SED achieve the highest possible function and quality of life through access to Nemours experts, clinical programs and support services, including:
- clinical trials research opportunities
- support services and community resources
Regional Spondyloepiphyseal Dysplasia Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete care for children with spondyloepiphyseal dysplasia at Nemours Children’s Hospital, Delaware (Wilmington, Del.) and select Nemours Children's Health locations.
Nemours Children’s Hospital, Delaware is ranked among the best children’s hospitals in the nation for pediatric orthopedics and surgery by U.S. News and World Report .
We offer complete care for children with spondyloepiphyseal dysplasia at Nemours Children’s Hospital (Orlando) and select Nemours Children’s Specialty Care locations.
We offer complete care for children with spondyloepiphyseal dysplasia at Nemours Children's Health, Jacksonville and our hospital affiliates, Wolfson Children’s Hospital and Mayo Clinic in Florida, with outpatient and follow-up appointments available at select Nemours locations.
Nemours orthopedic specialists provide the care and orthopedic surgery and hold dual physician leadership roles at Wolfson Children’s Hospital’s orthopedics team, ranked by U.S. News & World Report as one of the 50 best children’s hospitals in the nation for orthopedics.
We offer care for children with spondyloepiphyseal dysplasia at Nemours Children’s Specialty Care, Pensacola and our hospital affiliate, West Florida Healthcare, with outpatient and follow-up appointments also available at select Nemours Children’s Specialty Care locations.
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.
Scheduled Specialist Online Visits
Nemours now offers scheduled specialist appointments through live video chat. Ask your doctor if this is an option for your family.
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.
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