13-year-old in Calif. struggles with albinism

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VENTURA, Calif. - Carolina Canosa turned 13 this year. She has "Twilight" posters hanging on her bedroom wall and loves the Jonas Brothers, manicures and frozen yogurt, like any other teenager.

Carolina also albinism -- a condition that results in vision problems and little color in her skin, hair and eyes -- and that's what people always seem to notice first.

She has heard the names kids call her and has gotten used to feeling rejected. Her parents have tried to shield her from the stares of adults who sometimes follow her around a store to get a better look.

"I get excluded because I'm different," said Carolina, an eighth-grader. Now, she wants to speak out, hoping people will take the time to learn the truth.

"I just want people to see that I'm just a normal girl," she said.

Albinism affects about one in 17,000 people and is often misunderstood, said Michael McGowan, president of the National Organization for Albinism and Hypopigmentation, which provides support for people with albinism and educates others about the condition.

"It's a rare condition," he said. Some people might live their entire lives and never encounter a person with albinism.

Albinism occurs when the body is unable to produce or distribute a pigment that provides the color for hair, skin and the iris of the eye, according to the National Institutes of Health. Many forms of albinism also result in light sensitivity, rapid eye movements and vision problems.

Someone with albinism can see fewer details, McGowan said, and their eyes have to work a lot harder to discern an image.

For Carolina, albinism shows up in several ways. She has nearly white hair and pale skin, and her eyes change colors from blue to red or purple based on the light reflection. She is legally blind and uses a computer to make print appear larger.

Teresa and Daniel Canosa, who adopted Carolina when she was a baby in Chile, had researched the medical issues related to albinism but did not anticipate the social and emotional struggles the family would face.

"I never expected the social part to be the hard part," Teresa said. "I wasn't prepared for that."

But since preschool, there have been issues. At Montalvo and Anacapa Middle schools, teachers and staff members worked hard to meet Carolina's needs, her parents said, including providing vision specialist Adam Berry, who has been her advocate since the first grade.

There have been good years and bad. Fifth grade, when the rejection and name-calling peaked, was the worst. Carolina's parents, who both work full time, took turns going to the school to eat lunch with her. They tried bringing in food and donating games or equipment to help get all the kids together but were not very successful.

Even this year, Carolina came home upset after feeling like no one in class wanted her in his or her group. Carolina talked to a school counselor, and her teacher addressed the issue with the class.

It helped a lot, Carolina said. Since then, two girls have joined her for every group exercise. She's trying to put herself out there more, too.

Her parents have focused on building Carolina's self-esteem and finding the things that make her happy.

Carolina said she likes school and has had good friends and supportive parents, helping her through the tough times. She doesn't always notice the stares she may get. She thinks that might be the positive side of her vision problems.

"Usually when I meet new people ... they just think, 'Oh, that girl's different,' " she said. "That's what they notice."

If they looked deeper, they might notice that Carolina loves to read, write stories and wants to be an author someday.

She has a little brother, Andrew, 5, whom she gets along with most of the time. She's earned a senior brown belt in taekwondo, gets good grades, and mastered skating after a lot of bumps and falls.

"I think they would say, 'Wow, she does all of that and she has a vision problem,' " Carolina said. "That's what I think they'd say."

(Contact Cheri Carlson of the Ventura County Star in California at XX(at)xxx.com.)