As a child, Neena Nizar was a mystery to doctors. Her bones were weak, and as they grew, they curved painfully — but no one seemed to know why. It wasn’t until her toddler son began showing similar symptoms that she learned the cause of her pain: Jansen’s disease, a skeletal disorder that affects less than 40 people worldwide and causes bones to bend. Both her sons, now teenagers, have been diagnosed with the disorder, but Nizar, 45, who started The Jansen’s Foundation in 2017, is determined to find a cure. Next year, she’ll be the first to test an experimental treatment that could also help people suffering from cancer, kidney disease and other conditions. Nizar shares her story in this week’s issue of PEOPLE.
When Neena Nizar was a toddler growing up in Dubai in the United Arab Emirates, her parents noticed her arms and legs starting to bend at alarming angles. Her bones seemed unable to bear her own weight. When she didn’t walk on time, doctors suspected polio or rickets. “But,” she says, “they didn’t really have any idea what was wrong.”
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