Girl has ‘uncombable hair syndrome’ gene like Einstein

A six-year-old girl with hair so untameable she is likened to scientific genius Albert Einstein has a rare genetic disorder thought to affect just 100 people worldwide.

Little Charleigh Sayor has uncombable hair syndrome, meaning her frizzy white-blonde barnet grows so slowly she has only ever had one haircut.

Her mum, Lisa Parsons, 44, of Michigan, USA, said: ‘People always want to ask about her hair, or touch it. It looks rough and wiry, but it’s not.

‘They tell her she looks like Albert Einstein, who actually had uncombable hair syndrome too.

Charleigh’s hair is virtually impossible to tame 

Strangers often stop Charleigh in the street to talk about her unique hair

Charleigh's hair grows so slowly she's only ever had it cut once

The rare genetic disorder is thought to affect just 100 people worldwide

Lisa says she can comb her daughter's hair but it ends up tangled 10 minutes later

Lisa and her daughter Charleigh

 Charleigh’s mother, Lisa Parsons, said she does, occasionally, have people looking at her funny, as if to say, ‘Does she even comb her daughter’s hair?’

'Charleigh is so proud of it, though. She tells everyone she has magic hair that grows in the sun,' her mother, Lisa Parsons, said

‘Charleigh is so proud of it, though. She tells everyone she has magic hair that grows in the sun,’ her mother, Lisa Parsons, said

‘Charleigh is so proud of it, though. She tells everyone she has magic hair that grows in the sun.’

Single Lisa, who is also mum to Daniel, 24, told how Charleigh was born virtually bald – first sprouting hair when she turned one.

Even when short, her locks had a fuzzy appearance, prompting strangers to stop Lisa in the street, asking if she had crimped her daughter’s hair.

As she grew older, the schoolgirl’s hair became increasingly unruly, until it eventually took on the gravity-defying look she has today.

‘Nobody had any clue where it’d come from,’ said Lisa. ‘I’d never heard of uncombable hair syndrome. I just told Charleigh her hair was special, beautiful and unique.’

Then, around a year ago, completely by chance, Lisa and Charleigh were on a trip to Ohio when they spotted a teenage girl with the same spunglass-style hair.

Lisa told of how Charleigh is proud of her hair

Albert Einstein image is iconic in part because of his wild, apparently uncombed hair

Mother Lisa Parsons said: ‘They tell her she looks like Albert Einstein, who actually had uncombable hair syndrome too’

Charleigh has dubbed her locks "crazy hair"

Uncombable hair syndrome is also known as spunglass hair

‘Charleigh is so proud of it. She tells everyone she has magic hair that grows in the sun’

Charleigh was born bald, but first started sprouting hair when she turned one

Charleigh was born bald, but first started sprouting hair when she turned one

After stopping her for a chat, Lisa took a photo of the girl with Charleigh, later posting it to Facebook.

‘I joked that the girl was exactly what Charleigh would look like when she was older,’ she continued.

‘Loads of people began to comment underneath, posting links to articles about uncombable hair syndrome.

'She loves it, she calls it her crazy hair,' says Lisa

‘She loves it, she calls it her crazy hair,’ says Lisa

Lisa has spoken to other parents of children with uncombable hair from all over the world

When Charleigh first sprouted hair aged one, strangers would ask her mum Lisa if she'd crimped it

‘Thankfully, Charleigh has never been teased,’ her mother said

WHAT IS UNCOMBABLE HAIR SYNDROME? 

Uncombable hair syndrome is a rare inherited disorder that causes locks to stand up from the roots and not be flattened.

Such hair is usually silvery-blond or straw colored.

The hair usually appears between three and 12 months of age.

In rare cases, the syndrome has occurred alongside bone and eye abnormalities.

The syndrome usually resolves or improves at the onset of puberty.

It may be more manageable through applying conditioners and using soft brushes. 

Source: Genetic and rare diseases information center 

‘As soon as I read about it, I knew that’s what Charleigh had.’

In August 2017, Lisa took Charleigh to a dermatologist, who tested a strand of her hair and officially confirmed she had uncombable hair syndrome.

She was then offered a vitamin supplement to help her locks grow, in the hope that, once they were long enough, gravity would take over and straighten them out.

But, defiantly proud of her unique barnet, Charleigh refused to take it.

‘She loves it, she calls it her crazy hair,’ smiled Lisa. ‘Now it’s just past her neck, it’s long enough to put into short pigtails, but mostly, Charleigh likes to wear it down and show it off.’

Day-to-day, Lisa said she is so used to Charleigh’s hair that she doesn’t have an especially different care routine.

Washing it every other day, she uses standard high street brand shampoos – although she needs to apply more conditioner than usual.

The real battle is stopping her hair from matting as she sleeps.

A dermatologist officially diagnosed Charleigh last year

Uncombable hair syndrome is thought to affect just 100 people worldwide

‘It can tangle a lot where she rubs it against the pillow,’ said Lisa

Lisa always reminds Charleigh to be proud of her hair, saying it's unique and special 

Lisa always reminds Charleigh to be proud of her hair, saying it’s unique and special 

‘It can tangle a lot where she rubs it against the pillow,’ said Lisa. ‘It used to be slightly shorter at the back, where it was brittle and broke off.

‘Now, though, we use lots of conditioner to keep it healthy.’

Since Charleigh’s official diagnosis, Lisa has made contact with other families who have the same syndrome from across the globe.

She continued: ‘It’s remarkable – all the kids I’ve seen with uncombable hair look exactly alike. They have the same white blonde colour and sticky up texture.

‘I do, occasionally, have people looking at me funny, as if to say, “Does she even comb her daughter’s hair?” But I do, then 10 minutes later it’s tangled again.

‘Thankfully, Charleigh has never been teased, but I always make sure I remind her of how special she is, and tell her to be proud of her beautiful hair.’

 



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