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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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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."

Old to new | New to old
Oct 7, 2013 06:41 pm
 Posted by  AnnH

Well written story and this girl is just beautiful; she needs to be a model with those eyes that just sparkle. Loved hearing about her story.

Nov 2, 2013 08:32 pm
 Posted by  Ataylor1121

My daughter has a similar condition S.A.S short anagen syndrome.
She also is 6 and I had a hard time at first handling the news. I then turned my attitude around after seeing there are so many other wonderful qualities she has. I observed her at school, where I thought it was going to be pure torture for her. Just the opposite! She didn't miss a beat, and the kids accept her just as she is. She wears different head bands all the time and the girls always comment on how pretty they are. I now feel very grateful for the hair she does have and if it doesn't bother her I shouldn't let it bother me! It could be worse. She had a hard time for a little while but I realized its up to me to teach her to be comfortable in her own skin. She is a awesome little girl that lights up the entire room When she walks in. Great article!! This little girl in the article is absolutely beautiful!!

Dec 4, 2013 10:48 pm
 Posted by  PamS

My daughter was also diagnosed with Loose Anagen Syndrome when she was 2 yrs old. The doctor said at that time she would "maybe" be able to have enough hair to put into a small ponytail. I started giving her Biotin, changed her pillow case to a silk one, used no heat on it (like a dryer) and was very careful when I washed her hair. Around 7 or 8, her hair was fine textured, but looked a lot better. She didn't use a hair dryer or curling iron until she was around 16.

Now, at 24, she still has natural blonde hair, wavy, and just to her shoulders! It's not growing as well as she would have liked, but it's at least healthy looking, and a normal length. It's also important you find a hairdresser who understands how her hair is, and is very conservative in cutting. A good cut is important.

So, hang in there. There's a good possibility she will grow out of it.

Mar 29, 2014 05:08 pm
 Posted by  AndyL4

Hello my daughter is 3 and recently seen a Dermatologist who has diagnosed her w/ 1. Telogen Effluvium or 2. Loose Anagen Syndrome. I as her mother am having a difficult time w/ this. Her hair started thinning out in November of last year. It is now March and she has almost totally lost all of the hair towards the front of her head. What hair she does have in back is thin and tangles very easily. She has a lot of short hairs on the top of her head that seem to just stick up all over. The more I read up on both conditions I am lead to believe that she does have Loose Anagen Syndrome. My question for the mothers of children that have this is this, does the hair actually come out in clumps or just strands here and there? Also, any advice that you could offer as far as helping this condition would be great fully appreciated. Thank you!

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