what-is-uncombable-hair-syndrome,-caused-by-a-genetic-mutation?What is uncombable hair syndrome, caused by a genetic mutation?

Charlotte, a mother from Suffolk, England, whose daughter has uncombable hair syndrome, wants to teach her that “different is beautiful.”

When Layla was approximately one year old, she was diagnosed with this disease, of which there are barely a hundred cases recorded in scientific journals.

Charlotte claims that the girl’s hair, currently 3 years old, is always “fluffy” because it lacks protein and grows differently and “outwards.”

“We don’t treat it any differently, but the rest of the world does,” he says.

Freddie and Layla
Layla’s 4-year-old brother, Freddie, thinks his sister’s hair is “cute” and that it tickles when he hugs her. (Photo:@CAMERALIKESO)

She adds that the biggest challenge for her family is explaining “consent” to Layla.

“People just come up and touch it,” he adds.

“How do you teach a child that it is not okay to reach out and touch someone?”

Layla with her brother Freddie and her parents Charlotte and Kevin
Layla with her brother Freddie and her parents Charlotte and Kevin. (Photo: COURTESY OF THE FAMILY)

Charlotte says she went for tests when several people noticed that Layla’s hair was different, and after she suffered three or four nail infections.

The tests, he says, were not available on the NHS, so he went to a private trichologist (a hair and scalp specialist), who was “excited because it was the first case he had seen”.

“I was shocked, we always knew she was special, but then she was diagnosed as special,” says Charlotte.

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What is uncombable hair syndrome?

Uncombable hair syndrome, also called triangular pili and canaliculiis a rare condition caused by a genetic mutation.

The hair shaft can be triangular or heart-shaped, compared to normal hair, which has a circular cross section, according to research published in the American Journal of Human Genetics.

Researchers note that the disorder, which usually occurs in childhood, improves with age, in most cases.

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Charlotte indicates that the family wanted to “teach the girl that being different is beautiful,” so they created an Instagram account to “educate people.”

“There’s not much you can do with your hair. “I want him to love it and know that people love it too.”

Layla
Layla’s Instagram account has 2,300 followers and says she is “one of the lucky ones” to have uncombable hair syndrome. (Photo: COURTESY OF THE FAMILY)

According to Charlotte, when she recently went to a supermarket, a man aggressively told her “why are you combing your daughter’s hair like that? It looks like you rubbed balloons all over it.”

He says he thought carefully about how to respond, so he could show Layla how to handle it.

“I told him: I haven’t done anything to his hair, it’s natural and I think it’s beautiful.”

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