Loose Anagen Syndrome, a Benign Childhood Hair Loss Condition
In the realm of special needs, this may not seem so serious. But if you're a little girl who dreams of long locks like your sisters, instead of snotty looks from strangers, it's a hit on developing healthy self-esteem.
(page 2 of 2)
Shopping for toys can also become complicated, as the family is always on the lookout for girl dolls and figurines that have short hair. Snow White is a popular choice, and Christina has an American Girl doll, Kit, who has a short hairstyle.
"It made her happy to see it," Rovik says. "Being able to see things with short hair – it makes my life easier."
The good news, Weiermiller says, is loose anagen syndrome tends to go away on its own by adulthood – although when exactly that happens can vary.
"It's a rare thing to start with – and even more rare for it to continue into – adulthood," he says.
Rovik sees no signs so far that Christina's hair is changing and wonders whether it ever really will. She also knows more challenging times could be ahead as Christina gets older.
"Sometimes kids are cruel," Rovik says. "I pray that she will grow out of it. I just wish there was something I could do."
In the meantime, the Roviks always make sure Christina knows how beautiful she is – inside and out.
"She's a gorgeous kid," her mother says. "I think she's beautiful."
When discussing differences like this with young children, Weiermiller encourages parents to focus on their child's strengths and what they have in common with siblings or friends instead of their differences.
"Whenever you're explaining something like that – you have to focus on positives. You have to point out the fact that it is one minor thing in the whole scope of things," he says. "I think the biggest concern is the child feels 100 percent different. If you can show them they're 99.9 percent the same, that's a better way of getting them to view themselves."
Understanding the condition
The Roviks also seek awareness and understanding from the community.
The sometimes unruly appearance that loose anagen syndrome has given Christina's hair has elicited responses in public ranging from the sarcastic "That's an interesting haircut," to assumptions that the girl has cancer, Rovik says.
"I just want people to understand that she's not a boy, that she doesn't have a communicable disease. Nobody can catch it. It's not something that she's doing to herself. It's just the way she was made," she says. "I don't want people to make up assumptions."
Long hair or not, Christina is a "girly girl," her parents say, who loves princesses, playing dress-up and attending ballet class in addition to her competitive swimming.
"I don't want (people) to think differently of her and I want them to treat her like the girly girl that she is," Rovik says.
Christina has some goals of her own: "I want to swim in the Olympics," she says. And, as for her hair, her dream is a common one for girls her age, though it has special meaning for Christina.
"I want to have Rapunzel's blond hair," she says with a shy smile. "So it can be so long and longer than the whole world."