What is Osteogenesis Imperfecta (OI)?
OI is a condition you are born with. It makes bones more fragile than usual, so they can break easily. Even though OI starts in childhood, it continues throughout life. Fractures are more common in children, but adults can also experience fractures, especially after a fall or injury. With the right care, adults with OI can stay active and independent.
How does OI affect adults?
As you get older, OI can cause:
- Bone or joint pain
- Changes in posture or bone shape
- Shorter height
- Muscle weakness or tiredness
- Early hearing loss
- Eye problems, such as changes in the shape of the lens or thinning of the sclera (the white coat of the eye)
- Teeth that chip or wear easily
- More risk of fractures after a fall or accident
- Kidney stones, as the risk is slightly increased in people with OI Everyone’s experience is different — some adults have very few problems, while others need more regular medical care
.
Can adults with OI stay active?
Yes! Physical activity keeps muscles and bones strong. Choose low-impact exercises like swimming, walking, or cycling. Avoid contact sports or activities with a high risk of falls. Physiotherapy can help maintain movement and reduce stiffness.
Do adults with OI need regular medical check-ups?
Yes. Even in adulthood, regular check-ups help prevent and detect problems early. You may need:
- Bone density scans (DXA) to check bone strength. It is best to have these scans on the
- same machine each time, so results can be compared accurately over time.
- Hearing tests, as hearing loss can develop slowly.
- Dental check-ups, especially if you have brittle teeth.
- Eye check-ups, to monitor for changes in the lens or sclera.
- Kidney and blood tests, as the risk of kidney stones is slightly increased in OI. These tests
- help monitor calcium and vitamin D levels so supplements can be adjusted safely.
- Review of pain, posture, and mobility with your doctor or physiotherapist.
What can I do to protect my bones?
- Eat a balanced diet with enough calcium and vitamin D.
- Have your vitamin D and calcium levels checked regularly, and take supplements only as
- advised by your doctor.
- Get safe sunlight exposure daily.
- Stay physically active within your limits.
- Avoid smoking and limit alcohol, as these weaken bones.
- Take medicines exactly as advised by your doctor.
What about work and daily life?
Most adults with OI can work, travel, and lead fulfilling lives.
- If your job involves lifting or physical effort, talk to your employer about adjustments.
- Use supportive chairs or cushions to protect posture.
- Plan safe travel and use mobility aids if needed.
- Occupational therapists can help make your home or workplace safer and more
- Comfortable.
Will I need treatment as an adult?
Treatment is usually needed more regularly during childhood, when fractures are common. In adults, treatment should be guided by bone density results, fracture history, and overall health. Some adults may continue to benefit from bisphosphonate therapy or other bone- strengthening treatments, but the need should be reviewed by your specialist.For adults on long-term bisphosphonate therapy, drug holidays; (breaks from treatment) are sometimes recommended to avoid side effects and maintain effectiveness. If you are planning a pregnancy or could become pregnant, bisphosphonate treatment should be discussed withyour doctor, as it may need to be paused before conception.
Can I have children if I have OI?
Yes, many people with OI have children. OI can sometimes be passed from parent to child, so genetic counselling can help you understand your options before planning a pregnancy.
Where can I find support?
In India, the Indian Osteogenesis Imperfecta Foundation (IOIF) provides support, information, and a community for people living with OI. There are also international societies with more resources:
- Brittle Bone Society (BBS) — United Kingdom
- Osteogenesis Imperfecta Federation Europe (OIFE) — Europe
- Osteogenesis Imperfecta Foundation (OIF) — United States
For medical or personal advice, always consult your local OI specialist or healthcare team.
About the Indian Osteogenesis Imperfecta Foundation (IOIF)
The Indian OI Foundation works to support families and adults living with OI, raise awareness, and improve access to expert care across India. Visit our website or contact your local OI specialist for more information and resources.