What is osteogenesis imperfecta (brittle bone disease)?

Osteogenesis imperfecta (brittle bone disease) is a lifelong genetic condition affecting the body’s ability to make collagen protein, causing fragile and brittle bones. Without the right amount of collagen, bones are weak and highly susceptible to trauma, causing frequent fractures and breaks.

Symptoms include broken bones, bleeding, bruising, frequent nosebleeds, bowed legs, difficulties breathing, scoliosis, fatigue, sensitive skin, short stature, and weak muscles and tissues. While there is no cure, the condition can be managed.

What issues do children with osteogenesis imperfecta face?

PAIN

Weakened bones can lead to abnormal bending, painful breaks, and fractures

DISCRIMINATION

Children with frequent broken bones are vulnerable to bullying and exclusion

LIMITED MOBILITY

Children can lose the ability to walk, preventing them from attending school

How does surgery change a
child’s life?

Feet are straightened and can grow normally
Children experience restored confidence and hope as they are accepted into community life
Mobility improves so children can run, play, walk pain-free, completing school which lead to more opportunities

Miracles happen every day at CURE Children’s Hospital of Kenya

HOW STEPHEN OVERCAME BRITTLE BONE DISEASE

At one and a half years old, Stephen could not walk and a short while later, he broke his femur. His local hospital referred him for physiotherapy and his soft bones began to bend. His physiotherapist recognized his condition as brittle bones and referred him to CURE Kenya. At CURE Kenya, they received the care they needed. After multiple surgeries and months of therapy–and lots of love, Stephen can walk and play!