Osteogenesis Imperfecta (Brittle Bone Disease)

A doctor and a patient with osteogenesis imperfecta

Although there’s no cure just yet for osteogenesis imperfecta, our world-renowned orthopedics experts at Nemours are here to help. We’re dedicated to helping children with brittle bone disease develop increased bone mass and muscle strength, prevent or control osteogensis imperfecta symptoms and become as independently mobile as possible.

 
Read More About Osteogenesis Imperfecta

Children born with the genetic disorder osteogenesis imperfecta (also known as brittle bone disease) have bones that break easily — often from little or no apparent cause. These fractures are due to a collagen defect that causes the bones to be excessively fragile (collagen is a protein that makes up the framework of the body — the bones, skin, cartilage, etc.).

At Nemours, we believe in a strong doctor-patient relationship and understand that each child with osteogenesis imperfecta has unique needs.That means we'll work together to determine your child's specific needs when it comes to:

  • seating: seating devices to encourage healthy posture and prevent bowing of the long bones
  • adaptive equipment: to help your child get around and function day-to-day
  • counseling
  • orthopedic intervention

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
  • hard copies or electronic copies of all imaging studies including X-rays, MRI, or CT scans
  • 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: a free site offering support and communication to help your family through your child's medical journey

We know that dealing with osteogenesis imperfecta can be scary and challenging — especially when your child’s first diagnosed. At Nemours Children’s Clinic, Jacksonville, the compassionate expertise of our doctors — coupled with our child-centered, family-oriented atmosphere — helps to minimize the stress families and patients often experience throughout the evaluation, treatment, and rehabilitation process.

Working together with our partners at Wolfson Children’s Hospital, we offer the most comprehensive and effective care for children with osteogenesis imperfect (brittle bone disease).

An Experienced Team Dedicated to Kids With Osteogenesis Imperfecta

At Nemours, we treat the whole child, not just the condition. Because osteogenesis imperfecta can affect your child in many ways, you’ll have access to an entire team of Nemours specialists, including:

  • orthopedic surgeons
  • nurses
  • physical therapists
  • occupational therapists
  • adaptive technology experts
  • orthotists (specialists who fabricate and fit braces and other supports)
  • dentists
  • psychologists
  • social workers
  • geneticists

Special Therapy and Services for Children with Osteogenesis Imperfecta

Some children with osteogenesis imperfecta are shorter than other children their age and may need special seating devices to encourage healthy posture and prevent bowing of the long bones.

We treat a variety of conditions relating to brittle bone disease, including:
  • frequent fractures
  • dental problems (if the tooth enamel appears brown and wears down easily)
  • ligamentous laxity (very flexible ligaments)
  • spinal deformities
At Nemours Children’s Clinic, Jacksonville, we also provide a variety of services to diagnose and treat osteogenesis imperfecta symptoms, including:
  • medical history and physical examination
  • bone density testing
  • bone biopsy
  • skin biopsy
  • surgical management
  • pamidronate therapy
  • magnetic resonance imaging (MRI)
  • social work consultation
  • pool therapy
  • splinting
  • developmental evaluation
  • discussion of lift/transport/activities of daily living
  • positioning training
  • assistive or adaptive services
  • physical and occupational therapy consultation

No matter how severe your child’s osteogenesis imperfecta, know that at Nemours we do whatever it takes to give your child the very best, most compassionate treatment possible. We treat every child as we would our own — your child, our promise.