This leaflet was written by Dr Suma Uday, Senior Consultant in Metabolic Bone Disease, Indian Osteogenesis Imperfecta Foundation.
Can Osteogenesis Imperfecta (OI) be cured?
There is no complete cure for OI, but with the right treatment and care, most children and adults can lead active, independent lives. Treatment aims to reduce fractures, improve bone strength, mobility, and quality of life.
What are the main treatments used for OI?
Treatment usually includes a combination of medicines to strengthen bones, physiotherapy and exercise to improve movement and muscle strength, orthopaedic care to prevent or correct bone deformities, orthotic care for support and balance, assistive devices for mobility and safety, and nutritional support with regular monitoring. Each person’s treatment plan is tailored to their needs by a specialist team.
What medicines are used to strengthen bones?
The most common medicines used are bisphosphonates, such as pamidronate or zoledronic acid. These medicines help slow down bone breakdown, increase bone density, and reduce fracture frequency. They are usually given through a vein every few months. Sometimes oral tablets are used, but these are less effective, especially in children, unless the person has a very mild form of OI. Calcium may be supplemented after each bisphosphonate infusion to maintain healthy blood calcium levels. Treatment is generally started in childhood when fractures are frequent and may continue for several years. In adults, bisphosphonate use is based on bone density and fracture history, and the need for treatment is reviewed regularly. Drug holidays may be advised to avoid side effects and maintain effectiveness. If you are planning a pregnancy or breastfeeding, discuss bisphosphonate use with your doctor, as it may need to be paused beforehand.
Are there any side effects of bisphosphonates?
Side effects are usually mild and short-lived, such as fever, tiredness, or bone pain after an infusion. Your doctor will check calcium and vitamin D levels before each treatment to make sure it is safe. The rare side effects can be discussed in detail with your healthcare provider.
Are there other treatments for OI?
Some newer medicines, such as denosumab, teriparatide and setrusumab, are being studied for OI. There is not enough evidence to routinely use these drugs and they must be discussed carefully with a specialist before considering use. They are not used in children.
What is the role of surgery in OI?
Surgery may be needed to treat or prevent bone deformities or to help bones heal after fractures. A common procedure is intramedullary rodding, where metal rods are placed inside long bones like the legs to make them stronger and straighter. Surgery helps improve walking ability and reduce future fractures. It should be done by orthopaedic surgeons experienced in OI care.
How can physiotherapy help?
Physiotherapy is an important part of OI management. It helps to strengthen muscles and protect bones, improve posture and balance, maintain flexibility and joint health, and encourage safe activity and independence. Regular gentle exercise like swimming or hydrotherapy is excellent for both children and adults with OI.
What is the role of orthotic care?
Orthotic care involves the use of braces, splints, supports, or special footwear to help protect weak bones and improve mobility. It can:
- Support arms or legs after fractures or surgery
- Improve posture, balance, and walking pattern
- Reduce fatigue and pain during activity
- Help maintain alignment in growing children
- Provide stability for adults to reduce falls
Orthoses should always be custom-made and guided by an orthotist or physiotherapist experienced in OI, as ill-fitting devices may cause discomfort or skin irritation.
What is the role of occupational therapy?
Occupational therapists help people with OI live safely and independently. They may recommend mobility aids such as crutches, wheelchairs, or walking frames, suggest home modifications to prevent falls, and support with school, work, or daily activities.
Does diet make a difference?
A healthy, balanced diet is important. Eat foods rich in calcium such as milk, curd, cheese, ragi, and leafy greens. Get enough vitamin D from sunlight and foods such as eggs and fortified cereals. Drink plenty of water and avoid unnecessary supplements unless prescribed to reduce the risk of kidney stones. Maintain a healthy body weight to protect bones and joints.
What about pain management?
Pain can occur from fractures, muscle strain, or joint problems. Your doctor may suggest pain relief medicines such as paracetamol or other safe options, physiotherapy and gentle movement, and warm compresses or hydrotherapy. Long-term pain should always be discussed with your healthcare team so it can be managed safely.
What should regular follow-up include?
Regular follow-up with your OI specialist team helps review bone health and overall wellbeing. This may include:
- Growth and development review
- Bone density (DXA) scans performed on the same machine. DXA scans in children should
- be performed and interpreted by specialists familiar with paediatric adjustments
- Hearing, dental, and eye checks
- Review of orthopaedic and orthotic care
- Monitoring of calcium and vitamin D levels
- Physiotherapy and occupational therapy reviews
- Discussion of mobility, pain, and emotional wellbeing
Can people with OI live normal lives?
Yes. With the right treatment, support, and lifestyle, most people with OI can go to school, work, travel, and enjoy fulfilling personal and professional lives.
Where can I find support?
In India, the Indian Osteogenesis Imperfecta Foundation (IOIF) provides education, support, and connection for people living with OI. You can also find reliable information through the Brittle Bone Society in the United Kingdom, the Osteogenesis Imperfecta Federation Europe, and the Osteogenesis Imperfecta Foundation in the United States. Always consult your local doctor or OI specialist for personalised medical advice.
About the Indian Osteogenesis Imperfecta Foundation (IOIF)
The Indian OI Foundation works to support individuals and families, raise awareness, and improve access to expert care for people living with OI across India. Visit our website or contact your local OI specialist for more information and resources.