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08 June 2018

Woman with bone-breaking disease survives a decade without injuries

A woman with a potentially fatal condition for which she’s been admitted to hospital numerous times is finally able to live independently.

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A woman with a potentially fatal condition for which she’s been admitted to hospital numerous times is finally able to live independently.

Celeste Labayen (32) from California in the US suffers from a rare genetic disorder called osteogenesis imperfecta type one, which means she has highly fragile bones that can break from the slightest movement.

Her bones used to fracture when playing with her siblings and even when her parents held her. When she was 10 she severely fractured her femur, which left her wheelchair-bound for 15 years.

“When I was a kid I could break a bone from doing anything,” Celeste says. “It was really tough on my parents because they were trying to deal with taking care of a child with a condition they knew nothing about and were being wrongfully accused of intentionally hurting me.”

After having rods put in both tibias and her femur as a teenager, doctors gave her pamidronate injections for the next 10 years to increase her bone-density levels.

By the age of 25, Celeste’s bones were finally in good enough shape for her to get out of her wheelchair and relearn how to walk, which allowed her to move across the country by herself a mere two years later.

“Those procedures really changed me,” the 32-year-old says. “My bones are so much stronger now. I felt like a baby learning how to walk. It was the first time I was able to get out of my chair since I was 10 years old.

“I had to teach my body how to stand up again and I had to rebuild all of the muscles. At first it was difficult just to try to stand up.

“I’m living in an apartment now and being independent. I have a roommate who helps me with what she can, but for the most part I’m doing things by myself.

“I’m able to walk my dogs and go grocery shopping alone,” she says. “I’d never have imagined this.”

Celeste has adapted to her surroundings but must do everything much more carefully than other people to ensure she doesn’t break or fracture her bones.

Her adaptive lifestyle has also allowed her to go on holiday abroad and she’s visited Mexico, the Dominican Republic and the Philippines among other places.

“Traveling has been much easier,” she says. “There are so many more places I can get to.”

While her life has drastically changed, the condition still affects her in several ways and she often experiences chronic muscle and joint pains.

“It’s a lot better but I still get aches and pains on a regular basis,” she says. “Sometimes I’ll be out running an errand and I’ll randomly feel pain in a certain part of my body.”

She also hasn’t had any luck finding employment since moving to California and feels her problems with mobility is the reason why.

“I still haven’t been able to find a job. That’s been a really tough thing to deal with,” she says.

But for her one of the worst effects of the condition is that it makes it difficult to find a partner who’d be interested in building a future with her.

“It’s really difficult to find someone who’s serious about dating me. I hope that eventually changes.”

Sources: Magazine Features     

 Pictures: CATERS/WWW.MAGAZINEFEATURES.CO.ZA    

 
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