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.
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Christina Rovik, 6, 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 first-grader 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 Hospital. 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."