Stories

Conditions we treat: Brittle bone disease





Osteogenesis Imperfecta

This blog is part of an ongoing series looking to explain the common conditions CURE treats in ways that all of us non-medical folk can understand.

Brittle bone disease, also called osteogenesis imperfecta (OI), is a condition that affects how the body makes collagen to strengthen the bones. With a lack of collagen in the bones, fractures can easily occur even with mild trauma. Children who present with brittle bone disease have fragile bones accompanied by short stature.

Back in 2013, we met Ryan. When we met, Ryan was only a year old and had been experiencing hip pain. His mother was able to discern that his discontent was unusual, even though he was too young to communicate effectively. After reviewing x-rays of Ryan’s bones, the doctors found that a few of his bones had fractured and had not healed correctly. It was determined that Ryan suffered from brittle bone disease or OI.

Ryan has been a frequent patient at CURE Kenya over the years. He is now 9 years old and full of life! At his last visit, he was helping his mom as much as he could and looking forward to returning to school.

Ryan, after treatments at CURE Kenya, is helping his mom more now at home and looking forward to going to school.

According to NORD, approximately 20k to 50k people in the United States have OI. While in Africa it is estimated that it occurs once in every 100k live births. OI is hereditary and a genetic disorder. According to research done at CURE Kenya and published under the East African Orthopaedic Journal, OI is frequently encountered and constitutes 2% of all cases seen at the hospital. The medical charts of all patients admitted with OI over a period of 14 years [2000 to 2014] were reviewed. The study was carried out to determine the tribal and geographical distribution of patients with this condition in Kenya.

Although there are various methods of treating this condition, there is no way to prevent it at this time. One of the methods to treat brittle bone disease is through bracing to control bowed legs, a side effect of the disease. When identified early, bowed legs are relatively easy to control. The second method of treatment is surgery. A metal rod is inserted in the legs of the children living with brittle bones to reduce the number of times a fracture occurs.

It is rare to find children who can benefit from bracing because the diagnosis of brittle bones is usually made after five years of age in Kenya. Furthermore, the process of treatment can become very tedious and parents often grow impatient. To address this, our spiritual department encourages parents and tells them what to expect from treatment. They pray for them and talk to them about Jesus. The spiritual ministry offered at the hospital helps parents to realize the specific needs their child has and how to always be ready to help them — ways to be metally prepared to deal with difficult situations as they arise. “Ryan and his mother had come a long way, hoping things would be different through ups and downs and their lowest moments. Ryan now says that he has accepted, adjusted, and adapted to living with his condition and is very grateful that God opened the door to CURE.” Pastor Peter explained.

One of the beautiful things about CURE is that it allows everyone to participate in the life-transforming surgeries that are provided daily at the CURE hospitals all around the world. You don’t need to be able to understand words like bilateral, ventricle, genu valgum, congenital, or cerebral-spinal fluid to take part in the life-changing and life-saving work that is done. But with this said, having an understanding of the conditions CURE treats does allow a deeper appreciation of just how important the work your donation is enabling the CURE staff to do!


To support a child’s surgery, click here.

About The Author

Elvis Lemaiyan

My name is Elvis Lemaiyan from Kenya. I love taking photos a lot, and I really enjoy the company of kids because they say the most amazing things and they have the purest of hearts. Working at CURE is like a match made in heaven for me because I get to interact with kids and take their pictures. I studied Film Production in college, but I developed a bias toward photography in my first year and have been shooting since then. I am also a soccer player and a huge fan of the same. Most times I play as a striker, so you can see: all I do in life is shoot.​​

Read more about Elvis