When Jane Watiri was born, she had a fracture on her right leg and the doctor immediately put a cast on it when she was barely a day old. Upon further tests, she was diagnosed with a hereditary genetic condition known as Osteogenesis imperfecta (OI). This is a condition caused by defective genes which affect how the body makes collagen, a protein that helps strengthen bones.
People with OI might have bones that break easily, which is why the condition is commonly known as the brittle bone disease. This is how young Jane was introduced into a world of having to depend on calcium supplements to help her bones get stronger.
“The better part of my childhood was lived in excruciating pain caused by the countless bones I broke on both my legs and most of them were on my right thigh,” she says.
The severity of the condition may vary from one person to the other. While for some it may be discovered at birth, in others, the only symptom of OI might be an occasional broken bone later in their life.
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“My big sister has the condition too. But she wasn’t diagnosed as early as I was. At age four, when is nursery school, she hurt her leg and it got fractured. Turns out she had OI. Up until then, she could walk properly. Good news is she now has two beautiful babies who don’t have the condition.”
Besides brittle bones, one experiences pain in the bone, could be unusually short in stature and have brittle teeth. OI presents itself in varying degrees categorised in types I to VIII. Sometimes, the severity of these cases may also cause hearing loss in adults and loose joints. “I have type IV which is not as severe as type I,” Jane says.
Metal rods in the body
To manage the brittle bones, Jane underwent a couple of surgical procedures known as ‘rodding’.
“I had metal rods placed inside my body to correct the deformities caused by the fractures. This was done to strengthen my legs and also prevent them from getting any more fractures. Afterwards, I underwent frequent physiotherapy sessions to improve my delayed motor skills due to weak muscles. This played a huge role in my independence because I gradually gained my strength and started using crutches after many years of being confined to a wheelchair,” she told My Health.
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OI has no specific medication but there are treatments designed to prevent or control the symptoms and mitigate the severity to ensure one lives a quality of life.
Some of these procedures may include a patient having to undergo bracing where they wear braces on the legs to provide support for weak muscles and to properly align the joints. “One can also undergo corrective surgeries to realign the bones, especially if they grow outwards. However, we are advised to always eat foods rich in calcium and take calcium supplements to strengthen the bones,” Jane explains.
Affected persons are also instructed to avoid activities that put them at risk of a fall or collision, or put too much stress on the bones. They should however engage in low-impact exercises such as swimming to build muscle strength and mobility and increase bone strength. “My life may not be perfect but I’m proud and confident of the imperfections brought about by my condition because I have lived in it and through it from the get-go. The good thing is, it doesn’t stop me from living my best life,” she says.
Jane, is currently pursuing her Master’s degree, is a co-host of a TV show on KBC and an assistant county commissioner in the Ministry of Interior and Coordination of National Government.