Osteogenesis imperfecta

Living with

What is the average life expectancy for someone with osteogenesis imperfecta?

Osteogenesis imperfecta (OI) is a group of disorders. Sometimes, life-threatening complications occur in infancy. Other people do not develop symptoms until later in life, or only experience symptoms so mild that they go undiagnosed well into their adults lives. Generally, people with mild or moderate disease have a normal life expectancy. Because OI affects people so differently, it is difficult to make predictions about how the disease will progress for an individual child or person. Many people who are diagnosed early and properly treated, can have good, fulfilling lives. They can go to school, have friends and relationships, careers and have and raise families. People with the severe forms may have a shortened lifespan usually because of progressive problems breathing or accidental trauma.

Talk to your doctor and entire medical team about you or your child's diagnosis and individual prognosis. A genetic counselor can offer advice and guidance as well.

Steiner RD, Adsit J, Basel D. COL1A1/2-Related Osteogenesis Imperfecta. GeneReviews website. Accessed April 6, 2017. https://www.ncbi.nlm.nih.gov/books/NBK1295/

Osteogenesis Imperfecta. OrphaNet website. Accessed April 6, 2017. http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=654

Beary JF, Chines AA. Osteogenesis imperfecta: Management and prognosis. UpToDate Inc., website. http://www.uptodate.com/contents/osteogenesis-imperfecta-management-and-prognosis

FAQs about Osteogenesis Imperfecta. Brittle Bone Disorders Consortium website. https://www.rarediseasesnetwork.org/cms/bbd/Learn-More/Disorder-Definitions

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