Fibrous dysplasia: a disease very few people know about

Camryn Berry is a sixth-grader dealing with a disease few people have encountered. The tall, thin girl with long dark hair is recovering from her fourth surgery for fibrous dysplasia — a disease that causes a facial tumor that can disfigure her face and disrupt her breathing.

She sits on the on the soccer sidelines watching her brother Caleb, 14, instead of playing.

According to information posted on the Children’s Cranial Facial Association’s website, fibrous dysplasia is a noncancerous skeletal condition in which bone is replaced by structurally weaker tissue. The process continues until bones stop growing.

“The disease, truthfully, isn’t much fun,” 11-year-old Camryn wrote in an e-mail. “I like to play basketball as well as soccer. I am restricted from physical activity for three months. I really hope that I don’t have to miss out on basketball, too.”

She’s a talented writer, but shy about speaking on the phone about the disease that affects her life.

“I definitely don’t like the surprising wakeups in the middle of the night with throbbing teeth pain,” she said. “But, on the other hand, I am so glad that I am getting this experience because, before I was diagnosed, we didn’t even know, let alone think about, all the people and children with these facial differences.

Read more here: Fibrous dysplasia a diseasevery few people know about | The Kennebec Journal, Augusta, ME.