Treatment for Osteogenesis Imperfecta

Specific treatment for osteogenesis imperfecta will be determined by your physician based on:

• Your age, overall health, and medical history
• Extent of the disease
• Your tolerance for specific medications, procedures, or therapies
• Expectations for the course of the disease
• Your opinion or preference

To date, there is no known treatment, medicine, or surgery that will cure osteogenesis imperfecta (OI). The goal of treatment is to prevent deformities and fractures and allow the child to function as independently as possible.

Treatments for preventing or correcting symptoms may include:

• Care of fractures
• Surgery
• Rodding - a procedure to insert a metal bar the length of a long bone to stabilize it and prevent deformity.
• Dental procedures
• Physical therapy
• Assistive devices, such as wheelchairs, braces, and other custom-made equipment

Management of osteogenesis imperfecta (OI)

Management of the disease includes focusing on preventing or minimizing deformities, and maximizing the individual's functional ability at home and in the community. Management of OI is either non-surgical or surgical.

Non-surgical interventions may include one or more of the following:

• Physical therapy
• Positioning aids (to help sit, lie, or stand)
• Braces and splints (to prevent deformity and promote support or protection)
• Medications
• Psychological counseling

Surgical interventions may be considered to manage the following conditions:

• Fractures
• Bowing of bone
• Scoliosis - a lateral, or sideways curvature and rotation of the back bones (vertebrae), giving the appearance that the person is leaning to one side.
• Heart problems

Surgery may also be considered to maintain the ability to sit or stand.

Long-term outlook for an individual with osteogenesis imperfecta (OI)

Osteogenesis imperfecta (OI) is a progressive condition that needs life-long management to prevent deformity and complications. The interdisciplinary healthcare team helps the family to improve the functional outcomes and to provide support.

The Osteogenesis Imperfecta Society can also be an important resource.