Christina Rovik is happiest in the water.
Lined up with her swim team in one-pieces and swim caps, the standout swimmer looks just like all the other girls.
But it’s when the cap comes off that Christina starts to feel different.
The Canton child has a rare condition called loose anagen syndrome, which causes her to have very thin, short hair that falls out easily. Taking off her swim cap can painlessly pull out gobs of her hair, and the same thing can happen with hairbrushing or taking out a ponytail holder.
Her mother, Nancy Rovik, says Christina has been mistaken for a boy and handed “boy” toys at McDonald’s because of her short hair. Now she asks to wear dresses every day so people know she’s a girl.
“She cries and she wishes she had long hair,” Rovik says. “She gets really sad about it. I think it’s an emotional toll on her. ”
When asked about her hair, the adorable blue-eyed 6-year-old recalled a time at preschool when a friend tried to help her on a swing and accidentally pulled out a handful of her hair.
“I don’t want them to pull my hair out,” she says. “My hair is not attached to my scalp.”
What is it?
Loose anagen syndrome is seen most often in fair-haired children like Christina and usually appears between ages 2 to 5, says Dr. Richard Weiermiller, a pediatrician affiliated with Beaumont Children’s. It is more common in girls than boys, he says.
“It would be noticed because the child just never has any thickness to their hair or any length to their hair,” Weiermiller says. Children with the syndrome rarely need haircuts.
In Christina’s case, she was 2 1/2 years old when her big sister Mackenzie gave her a haircut while mom and dad weren’t looking – it became her “first and last” haircut, Nancy Rovik says.
“It never grew back,” she says. “It just kind of kept getting thinner and thinner and more of it was falling out. It would be on her pillow, it would be everywhere.”
Rovik took Christina to see a pediatric dermatologist at age 4, where she was diagnosed with loose anagen syndrome.
Little is known about why the syndrome develops, though some research suggests it can sometimes be related to certain hereditary disorders, Weiermiller says.
“It has to do with the way we grow hair,” he says. Just as infants often have bald spots on the backs of their heads due to sleeping on their backs, “it’s the same basic premise with people with loose hair.
“That isn’t loose anagen syndrome, but it’s a similar process,” he says.
Some children with the syndrome are more affected than others. “It’s a minor issue for some kids, whereas for other kids it can be pretty drastic,” Weiermiller says.
There is no cure for loose anagen syndrome.
“The basic treatment is none, other than trying to prevent trauma to the hair itself,” he says. “The least you can do to manipulate the hair, the better in terms of keeping it in place.”
The Rovik family has made some adjustments at home to help Christina, including using a soft bristle brush, avoiding the blow dryer and curling iron and using baby shampoo. They take extra precautions outside because Christina’s scalp sunburns very easily.
Nancy Rovik also started doing her other two daughters’ haircuts herself so Christina doesn’t feel left out by a trip to the salon.
“You can’t treat one differently,” she says.
Mom and Mackenzie have also both chosen shorter-than-usual haircuts recently, so Christina would feel less envy over her mom and sister’s long, thick locks.
But despite her best efforts, Rovik can’t help but feel sorry for Christina when it’s time for those back-to-school trims at home, or when she sees her daughter brushing or braiding sisters Mackenzie and Samantha’s hair for them.
“There’s nothing I can do to make her hair long,” Rovik says. It’s even more noticeable to others “when your 4-year-old has longer hair than your 6-year-old.”
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.”
This article was originally published in 2013 and is updated regularly.
Photo by Kristen Hines