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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.

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."

Family changes

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."

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!

May 4, 2014 07:40 pm
 Posted by  amber and Zozo

My daughter was diagnosed with LAS two years ago she is now 5 and her hair is super short and wiry. She starts kindergarten in the fall. She has not had problems making friends at preschool with her bright and beautiful self. I say she makes up for in brains what she lacks in hair. As a mom I worry and just want her hair to grow. Doctor's all seem to be baffled. Is there any treatments that help? (We take biotin)

Jul 15, 2014 09:59 pm
 Posted by  Shawn Mendes' fries

This girl goes to my school and she is the sweetest thing and doesn't at ALL let it show that her difference effects her.

Jul 19, 2014 04:58 pm
 Posted by  Sharon2k

My 4 year old daughter was diagnosed with LAS in May 2014 after I seen a marked difference of hair loss since Thanksgiving. I had taken a photo collage of her on her 4th Bday in April and noticed how much hair she had lost. I took her to a pediatric dermatologist May and she suggested that I start using Nioxin on her and also have her take biotin. I do see little tufts of thicker hair around her crown but the hair she does have with a little bit of length is so thin and sparse it makes me sad. She draws self portraits of her with long hair and tells me she dreams of having long hair one day soon. There is a FB closed group called LAS and SAS if you would like to join. They offer support and great feedback of what has/hasn't been working for their kiddies also with LAS/SAS. If any of you have any tips on any research or information that helps .. please share. Thanks.

Aug 26, 2014 11:49 am
 Posted by  topgun335i

My daughter is 10 and was diagnosed with LAS at age 5. She started losing her hair at 1 1/2. Lost her hair completely at age 8 and this is the longest it's been ever. It's right under her ears, and now she's losing her hair again. It makes it difficult because my older daughter, 13, and myself have long thick hair. She's such an inspiration. Our children are the most AWESOME children out there!!!! At her new school, there is a 1st grader with Alopecia, so it makes her feel a little bit better. Thanks for info about the hair dryer and curling iron. I've also stopped putting her hair in ponytails and she's been taking Biotin. I know it takes time, but my husband and I have instilled in her that she doesn't need hair to make her beautiful and being positive about her condition is helping. I wish you all the best with your beautiful kiddos.

Sep 1, 2014 05:20 pm
 Posted by  Turnbula

I am 22. Four years ago I was diagnosed with Loose Anagen. I have never had hair passed my shoulders. the back of my hair is a lot shorter than the rest and it pretty much all round sucks...for me it hasn't gotten any better with age...actually it's getting worse. It's getting thinner and thinner. I had to move schools at one point as they all called me Chemo. I know some people say it's just cosmetic but it has ruined my life. I just hope the all these kids on here grow out of it. :(

Sep 19, 2014 11:51 am
 Posted by  cat

Hi,

May I know what's the dosage of the biotin is your kid taking?

Regards,
catherine

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