Girl with Uncombable Hair Syndrome is finally able to have her hair brushed after nine years

A little girl who suffers from uncombable hair syndrome is finally able to have her hair tamed after nine years. (Caters)
A little girl who suffers from uncombable hair syndrome is finally able to have her hair tamed after nine years. (Caters)

A girl who has a rare condition, which leaves her hair impossible to brush, has had her locks tamed for the first time in nine years.

Lyla Grace Barlow, nine, from Derby, has suffered with Uncombable Hair Syndrome (UHS) since she was one.

The condition, which is caused by mutated genes, is thought to affect around one in 100 people in the world and results in uncontrollable frizzy hair that cannot be combed flat.

But after years of tearful struggles trying to style Lyla Grace’s hair, mum, Alex Barlow, 32, has revealed her daughter’s bushy mane has started to tame, meaning it is now able to be brushed and even plaited, which makes life much easier for them both.

“It’s so much easier to brush and she’s a lot happier with it now,” the mum-of-four reveals.

“We can plait it and tie it up and when it’s tied up you can barely tell she’s got the condition.

“She loves her hair now.”

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Lyla Grace suffers from uncombable hair syndrome. (Caters)
Lyla Grace suffers from uncombable hair syndrome. (Caters)

The mum said people would often compare her daughter to Albert Einstein because her hair would stand on end, but now it has grown longer, it is much easier to manage.

“The condition does calm down as children hit puberty so, although it’s still there, it has tamed a lot,” she adds.

Alex and her husband Mark, 42, a decorator, tried endless products to try and untangle Lyla Grace's knotty locks, but nothing seemed to work.

Their daughter would often compare her hair to that of her sisters, Emilia, 11, Nancy-Rose, six, and Mary-Jean, one.

Lyla Grace was officially diagnosed with the condition when she was five, after a spell in hospital for glandular fever, with doctors admitting they’d never seen hair like it.

“Lyla Grace’s hair started growing and her baby hair was just like fluff,” Alex explains.

“I thought it was amazing but I had a feeling something was wrong.

“People said it was just baby hair, but her sister is 20 months older than her so I knew it wasn’t normal.

“We had a graph of different types of hair and we couldn’t find hers on there.

“It was just fluff, like candy floss.”

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Lyla Grace and her mum Alex. (Caters)
Lyla Grace and her mum Alex. (Caters)

Until Lyla Grace was about four years old her hair remained quite short, then it started growing and matting, which her mum says was difficult to manage.

“We used lots of products to try and get a comb through it but nothing worked,” she explains.

“It was painful for her when I tried to brush it and it used to stand on end.”

Alex says her daughter had a number of illnesses when she was younger and was in hospital a lot, so the doctors were always trying to work out what was wrong with her hair.

“We thought it could have been a vitamin deficiency,” she explains.

“Her doctor said he hadn't seen hair like it in 25 years.

“It's caused by heart shaped follicles, a normal person has round or oval shaped follicles.”

Watch: Adorable baby has been diagnosed with uncombable hair syndrome.

Despite the painful mornings and attempts to brush her hair, Lyla Grace grew to love her fluffy frizz, which has made her famous at school.

“She really embraces her hair and the kids at school love it,” says Alex.

“All the older kids ask to feel it, so she's been really lucky.

“We've raised her to be proud of her hair and be happy with who she is.

“As long as she goes out with that attitude, she’ll be fine.”

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Lyla Grace is finally able to have her hair tamed. (Caters)
Lyla Grace is finally able to have her hair tamed. (Caters)

What is Uncombable hair syndrome?

According to the Genetic and Rare Diseases Center (GARD), Uncombable Hair Syndrome (UHS) is a rare disorder of the hair shaft of the scalp.

It has been found to be caused by mutations in three genes that are involved in hair shaft formation.

The condition is usually characterised by silvery-blond or straw-coloured hair that is disorderly; stands out from the scalp; and cannot be combed flat, with the signs typically becoming apparent from three months of age to 12 years of age.

There is no definitive treatment for uncombable hair syndrome, but the condition usually improves or resolves on its own with the onset of puberty.

In order to help manage the condition, the GARD suggests gentle hair care using conditioners and soft brushes, along with avoiding harsh hair treatments such as permanent waves (perms); chemical relaxants; or excessive brushing and blow drying.

People with concerns about symptoms of UHS are encouraged to speak with their GP or dermatologist about being evaluated for the condition.

Additional reporting Caters.

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Watch: Little girl has uncombable hair syndrome.