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'Uncombable hair syndrome' is real: Meet the girls with the unruly manes

TODAY logo TODAY 4/3/2019 A. Pawlowski

a woman smiling for the camera: Girl with troll hair © Kennedy News and Media Girl with troll hair All of us may feel like we experience "uncombable hair syndrome" at one point or another. Meet two girls who live with the real thing.

They're two of only about 100 people in the world known to have the genetic condition. Uncombable hair syndrome is characterized by dry, frizzy hair that's "disorderly," stands out from the scalp and can't be combed flat, according to the National Institutes of Health. The hair doesn't grow downward, but out from the scalp in multiple directions, the agency notes.

a little girl sitting in a chair: Girl with troll hair © Kennedy News and Media Girl with troll hair The family of seven-year-old Wynter Seymour, from Northallerton, England, affectionately compares her to a Troll Doll and Chucky from the horror movie "Child's Play."

"Her hair is just like the doll's and she's got a temper like Chucky sometimes, too," her mother Charlotte Seymour told Kennedy News and Media.

a little girl smiling at the camera: Girl with troll hair © Kennedy News and Media Girl with troll hair "Her hair is crazy. It's almost like it clumps together and in the middle she's got a million mad partings. You really can't get a comb through it. For school I just grab it and stick it up in a bobble to keep it out of her way... but doing anything else with it isn't worth it. It's too painful for her."

Wynter likes her hair and enjoys the attention she gets wherever she goes, her mom told the news agency, adding the girl is very confident. Her two sisters don't have the condition.

a group of people posing for the camera: Girl with troll hair © Kennedy News and Media Girl with troll hair The family has tried all sorts of products to manage the girl's hair, described as "very wirey, very matted," but now her mom just runs her fingers through it with a bit of oil. Wynter was born with dark hair, but light fluff soon started to appear and the girl became completely blond.

In fact, uncombable hair syndrome usually appears in childhood and the affected kids have silvery-blond or straw-colored hair, NIH notes. The amount of hair is normal, but the strands often grow slowly. Mutations in certain genes that are involved in hair shaft formation appear to be the cause.

Thousands of miles away, Shilah Yin, 9, can relate.

a little girl posing for a picture: Shilah Yin has uncombable hair syndrome © shilahmadison/Instagram Shilah Yin has uncombable hair syndrome "Shilah loves her unique hair, but that has come from constant positive reinforcement at home from friends and family," her mom Celeste Calvert-Yin, who lives in Melbourne Australia, told TODAY via email in 2017.

"As a little, little girl she often told us she was like a unicorn as they are very special and unique just like her. It brought a tear to our eye."

Shilah was born with ordinary brown hair, but the family noticed a strawberry blond fuzz peeking through when she was about 3 months old. From then on, it kept growing straight out and became even blonder. It has never grown past its current length since Shilah turned 2, her mom said.

The condition is often inherited, but Calvert-Yin said there's no history of it in the family. Shilah's brother Taelan has brown hair that's completely straight. The family didn't even know about the syndrome until 2016.

Shilah noticed she was different when she was about 4, and the attention from other kids and adults made her uneasy. That's when her family told her being different was awesome, Calvert-Yin said.

"Since then she has never really looked back… and now thrives on all the attention," she noted.

"Shilah has the most confident, individual personality I know and it just adds to her character."

Still, there can be challenging moments. People sometimes take photos of Shilah and touch her hair without permission. The family hears constant comments from strangers that can be offensive and hurtful at times.

Now that her parents know about uncombable hair syndrome, they let others know about it. Most people tend to think they're joking, "but we say, 'Just Google it and you will see,'" Calvert-Yin said.

Managing Shilah's mane is another challenge. The little girl hates her morning hair routine, which can last 10-20 minutes, her mom said. She sprays a detangling solution and combs Shilah's hair very gently with a wide-tooth comb.

"Her favorite part of her hair routine is when her dad blow-dries it for her. Together they manage to comb and dry her hair so that it looks super fluffy. Shilah loves it," Calvert-Yin said.

Shilah prefers to wear her hair loose or in braids. Clips or headbands against her scalp are painful, so ponytails are out.

The family has begun documenting Shilah's experience on Instagram to share how special she is and make others aware of the syndrome.

Her parents don't know how her hair will change as she grows up, though the condition usually improves over time, with hair returning to normal by adolescence, NIH notes.

"Shilah no longer feels alone or isolated and for that we are very grateful," her mom said. "There are others around the world just like her, [and] now she knows that."

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