(Also commonly known as Brittle Bone Disease)
This leaflet was written by Dr Suma Uday, Senior Consultant in Metabolic Bone Disease, Indian Osteogenesis Imperfecta Foundation.
What is Osteogenesis Imperfecta (OI)?
Osteogenesis Imperfecta, or OI for short, is a condition where bones break easily, often from minor injuries. It happens because the body’s collagen, an important part of bone strength, doesn’t form properly. OI can also affect hearing, teeth, and growth.
Why do bones break so easily?
In OI, the collagen in bones is either not made correctly or not made in enough quantity. This makes bones less flexible and more fragile than usual.
Is OI the same in every child?
No. OI can range from mild (few fractures) to severe (many fractures and bone deformities). Some children may only have a few breaks, while others may need more frequent medical care.
How is OI diagnosed?
Doctors diagnose OI by looking at your child’s history of fractures, physical features, and family history. Sometimes, bone X-rays or genetic tests help confirm the diagnosis.
Can OI be cured?
There is no complete cure for OI, but treatment can make a big difference. Medicines called bisphosphonates help strengthen bones, while physiotherapy and surgery help improve movement and bone shape.
How can I care for my child with OI?
• Handle your child gently, especially during lifting or dressing.
• Encourage safe exercises such as swimming.
• Provide a diet rich in calcium and vitamin D.
• Keep the home safe to prevent falls.
• Regularly see your child’s OI team for check-ups.
Will my child be able to go to school and play?
Yes. Most children with OI can go to school, play with friends, and take part in many activities. Teachers and friends should understand that your child’s bones are more fragile, so gentle care and support are important.
Can OI affect hearing or teeth?
Yes. Regular hearing tests and dental check-ups help detect problems early and keep them well managed.
What support is available for families?
Living with OI can be challenging, but you are not alone. Families can get support, advice, and connect with others through the Indian Osteogenesis Imperfecta Foundation (IOIF). Information can be found from international support societies such as:
The Brittle Bone Society (BBS)- United Kingdom
Osteogenesis Imperfecta Federation Europe (OIFE)- Europe
Osteogenesis Imperfecta Foundation (OIF) — United States
About the Indian Osteogenesis Imperfecta Foundation (IOIF)
The Indian OI Foundation works to support families, raise awareness, and improve access to expert care for people living with Osteogenesis Imperfecta in India. Visit our website or contact your local OI specialist for more information and family resources.