October 12, 2010

Fibrous dysplasia a disease very few people know about

BY BETTY ADAMS Staff Writer

BY BETTY ADAMS

Staff Writer

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.

"The disease has taught me so much about myself and others. It might be weird, but I take this opportunity as a blessing."

Her most recent eight-hour operation at Massachusetts General Hospital on Aug. 18 cleared her airway.

"She is actually doing very well," said her mother, Tammy Berry. "Her swelling has gone down. She looks good for what she's gone through. This past time, it had grown so much, it had actually displaced her eyeball. She had to have an eye orbit specialist to assist at surgery."

Tammy Berry discovered the tumor when Camryn was 6.

"Everything was fine," Tammy Berry said. "She had a perfectly normal, healthy childhood. She was laying in my lap and opened her mouth to speak. She had a big mass in her mouth."

Their physician immediately referred them to MassGeneral, where Camryn is being treated by Dr. Leonard B. Kaban, chief of oral and maxillofacial surgery.

The Berrys live in Livermore. Tammy Berry is a registered nurse in the cardiac and pulmonary rehabilitation unit at Rumford Hospital; her husband, Andrew, owns Mt. Blue Agway in Wilton, and is assistant fire chief for the Livermore Fire Department.

September was Craniofacial Awareness Month, and the Berrys are doing their part to try to educate the public.

"It's hard for people to imagine what it is," Tammy Berry said.

Most times, Camryn doesn't have outward signs of the tumor.

"It's a tumor bigger than a baseball inside her head," Tammy Berry said. "It would be helpful for people to understand. Basically, we're shaving it or debulking it so it will have room to grow later. Instead of growing outward, it will grow inward."

Camryn spent a year on an experimental drug that seemed to help control the tumor's growth. Since she came off the medication, the tumor stared growing again.

More surgery is in Camryn's future.

"I just found out (last week) at my doctor's appointment in Boston, two more surgeries are being planned, one possibly in a few months to correct around my eye," Camryn said. "The other will be held off until school is out for the summer because that will be a bigger surgery with a lot of recovery time."

She accepts it with equanimity.

"When my family and I went to the 20th annual children's craniofacial retreat, I saw children just like me that had had more than 10 or even 20 surgeries," Camryn said. "Just to compare me to them and to walk in their shoes, it's just so unbelievable what they're going through. Every time I complain I feel like I am taking all that I still have -- even though I do have a craniofacial abnormality -- for granted. Thinking about them and what they have been through makes me less nervous."

She's part of the Children's Craniofacial Association, and their website is http://www.ccakids.com/

As she recovers from one surgery and awaits the next, Camryn can do most things middle-schoolers like to do: "hang out with friends (I have so many great friends), play sports (in moderation), paint and draw (I have a passion for both).

"I can do anything (except for play goalie in soccer because the tumor could fracture and that would be BAD!). I am very lucky," Camryn wrote.

Betty Adams -- 621-5631

badams@centralmaine.com

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