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There are many ways you can help children and their families get the care they need.
Boston Children's Hospital's interdisciplinary team of sub-specialists provides comprehensive treatment for osteogenesis imperfecta—including evaluation, diagnosis, consultation and follow-up care.
To date, there's no known treatment, medicine or surgery that can cure OI, but treatment for the condition aims to:
Treatments for preventing or correcting symptoms may include the following:
Osteogenesis imperfecta is a serious lifelong condition that needs to be managed through an interdisciplinary medical approach to maximize a child's quality of life and ability to function. The condition presents complex challenges on anatomical, medical and socio-psychological levels.
Nevertheless, children with OI can grow up to lead full, productive lives. Some prominent figures who have OI include:
If your child has had surgery, she'll probably stay in the hospital for a couple of days to a week and will receive pain medication. When she goes home, she'll need to limit her weight-bearing activities, and she might use crutches or a walker for a few weeks. Physical therapy will help her restore her muscle strength. Her doctor will advise on what activities she'll be able to resume, and when.
The National Institutes of Health advise the following modifications to protect the bones and tissues of a baby, child or teen with OI—and to adapt her living spaces to her condition:
At Boston Children's, we understand that a hospital visit can be difficult. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit the Center for Families for all you need to know about:
In particular, we understand that you may have a lot of questions when your child is diagnosed with osteogenesis imperfecta. Will my child need surgery? How long will her recovery take? How will the condition affect her long term? Boston Children's can help you connect with extensive resources to help you and your family through this stressful time, including:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”