BY NICOLAS FERNANDES
A woman with a fatal bone-breaking disease that sent her to the hospital so many times her parents were accused of child abuse is now living independently and hasn’t ‘cure’ in over 10 years.
Celeste Labayen, 32, of Murrieta, California, USA, suffers from Osteogenesis Imperfecta Type One, a rare genetic disorder characterized by bones that can break from the slightest movement.
They used to break from playing with her siblings and being held by her parents, once occasion where she severely fractured her femur at the age of ten left her wheelchair bound for 15 years.
After having rods put in both tibias and her femur as a teenager, doctors gave her Pamidronate injections for the next ten years, increasing her bone density levels.
By age 25, the 4’2 woman’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.
Celeste has adapted to her surroundings, doing everything much more carefully than the average person to ensure that she doesn’t break or fracture her bones.
Her adaptive lifestyle has also allowed her to go on vacations abroad, including those to Mexico, the Dominican Republic and the Philippines.
She said: “When I was a kid, I could break a bone from doing anything.
“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.
“Those procedures really changed me. 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 ten 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 to even try to stand up.
“I’m living in an apartment now and being independent. I have a roommate that helps me with what she can, but for the most part I’m doing things by myself.
“I am able to walk my dogs and go grocery shopping alone. I never would have imagined this.
“Traveling has been much easier. There are so many more places I can get to.”
While her life has drastically changed, the condition still affects Celeste in several ways.
She often experiences chronic muscle and joint paint while going through her daily life.
Celeste said: “It is a lot better, but I still get aches and pains on a regular basis.
“Sometimes I’ll be out running an errand and I’ll randomly feel pain on a certain part of my body.”
She also has not had any luck securing a job since relocating to California.
While her mobility is a lot better than it previously was, she feels it is holding her back from working.
Celeste said: “I still haven’t been able to find a job.. That has been a really tough thing to deal with.”
But one of the worst affects of the condition is finding a partner who is interested in building a future with her.
She added: It’s really difficult to find someone who is serious about dating me. I hope that eventually changes.”
Osteogenesis Imperfecta is a genetic mutation in the collagen that keeps the bones secure, according to Dr. Francis Glorieux, chairman of the Medical Advisory Council at the Osteogenesis Imperfecta Foundation.
“It is caused by an anomaly in the collagen of the bone. The collagen keeps the bone hard so that it can function properly. When the anomaly is present, it causes the bones to become brittle.”
Dr. Francis added: “In severe cases, rods can be put in the legs, arms and spine to keep the bones straight even when they fracture.
“One thing that is striking is the resilience of those with the disease. Despite their limitations, they are extraordinary. I have several patients who go to university every day on their wheelchairs.”