Little boy has ultra-rare ‘uncontrollable hair syndrome’ which makes strands stand up on end

Mother of little boy with ultra-rare ‘uncombable hair syndrome’ which makes his strands stand up on end proudly shares photos of his wild locks to raise awareness – after a stranger diagnosed her son on Instagram

17-month-old Locklan’s hair started growing in at five months and his parents noticed an odd textureA stranger messaged on Katelyn Samples, 33, on Instagram to ask if the boy had uncontrollable hair syndrome’She and her husband, Caleb, 33, took Locklan to a specialist in Atlanta, Georgia, who ran tests and confirmed the diagnosisThere are only about 100 confirmed cases of the condition, which causes hair to grow in all directions and makes it impossible to brush downIt’s usually straw-colored with a dull texture, and it is most often found in young children, who grow out of it in puberty and adulthood Katelyn said Locklan’s hair is delicate but she rarely has to wash it because it doesn’t get greasy  



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A Georgia mother is spreading awareness about a super-rare condition called ‘uncombable hair syndrome,’ which causes her own son’s unruly hair to grow out in all directions — and makes it impossible to comb down.

Katelyn Samples, 33, from Atlanta, Georgia, says that when her 17-month-old Locklan’s hair started to grow in at around five months old, she and her husband, Caleb, 33, thought the odd texture was just a sign that it would be curly.

But a few months later, when someone on Instagram suggested that he could have uncombable hair syndrome, they got Locklan checked out by a specialist — and learned that he is among only about 100 reported cases in the world. 

Little Locklan from Atlanta, Georgia has uncontrollable hair syndrome, a real and very rare condition

The 17-month-old boy’s hair started growing in at five months and his parents noticed an odd texture

A stranger messaged on Katelyn Samples, 33, on Instagram to ask if the boy had uncontrollable hair syndrome’

Locklan’s hair started to grown in at five months old, and Katelyn and Caleb described the texture as ‘peach fuzz.’

At first, they assumed that it would grown in curly like Locklan’s two-year-old brother, Shepard.  

‘We were like, huh, what is this?’ Katelyn told People. ‘We knew it was different but didn’t know exactly how. And then it kept growing and growing.’

They didn’t realize just how different the little boy was until this summer, when a stranger messaged Katelyn on Instagram asking if Locklan had been diagnosed with uncombable hair syndrome.

Katelyn didn’t know what that was.

‘At first, you see “syndrome” and you’re like, “Oh my gosh,” like is something wrong with my baby? Is he in pain or something?’ Katelyn told Good Morning America.

 ‘At first, you see “syndrome” and you’re like, “Oh my gosh,” like is something wrong with my baby? Is he in pain or something?’ Katelyn said

She and her husband, Caleb, 33, took Locklan to a specialist in Atlanta, Georgia who ran tests and confirmed the diagnosis

The doctor told her that she hadn’t seen a case of uncombable hair syndrome once in the 19 years she’d been practicing

The condition causes a structural anomaly of the hair that causes it to grow in all directions and makes it impossible to brush down or flatten

Also called spun glass hair, it’s usually straw-colored with a dull texture – and under a microscope, the hairs are triangular in shape, rather than cylindrical

‘I just went in a tailspin and did a Google deep dive, called his pediatrician and the pediatrician even was like, “Hang on, let us look into this.” They hadn’t even heard of it. So they sent us to a specialist, a pediatric dermatologist at Emory in Atlanta, and that’s where we were able to get the diagnosis.’

The doctor told her that she hadn’t seen a case of uncombable hair syndrome once in the 19 years she’d been practicing.

It’s certainly a rare genetic condition, which causes a structural anomaly of the hair that causes it to grow in all directions and makes it impossible to brush down or flatten.

Also called spun glass hair, it’s usually straw-colored with a dull texture — and under a microscope, the hairs are triangular in shape, rather than cylindrical.

Only about 100 cases of the syndrome have reported in the world, though there may be more unreported cases, and it usually affects children between the ages of three months to three years. It tends to improve into puberty and adulthood. 

Only about 100 cases of the syndrome have reported in the world, though there may be more unreported cases

It usually affects children between the ages of three months to three years. It tends to improve into puberty and adulthood 

Katelyn said Locklan’s hair is delicate but she rarely has to wash it because it doesn’t get greasy

The family is embracing the boy’s hair, and dressed him up as Doc Brown from the Back to the Future movies for Halloween

Uncombable Hair Syndrome: The condition that was made famous by Albert Einstein 

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 

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Katelyn was surprised to get a diagnosis of such a rare condition.

‘You’re just going about your day thinking everything’s fine and that your kid might have curly hair, which does run in the family. And then to hear that there’s a rare syndrome associated with your kid — it was crazy,’ Katelyn said.

Fortunately, Locklan is developing normally in every other way, was she and Caleb were told that they didn’t need to be concerned. 

Managing his hair is a bit different: Katelyn said that her son’s hair is fragile and can tangle and get matted easily.

She said that she rarely washes it, unless he is playing in dirt, noting that it doesn’t get greasy.

It also draws a lot of attention when they go out.

‘We get a lot of comments about him looking like a dandelion and that’s actually a very accurate description of appearance and how it feels,’ she said. 

‘His hair is extremely soft, like a little baby chick. People will ask to touch it, which is fine with us, as long as people ask.’ 

Locklan has also earned attention on Instagram, where he has 16,700 followers. 

‘Our biggest message is to celebrate what makes you stand out and what makes you different and hopefully bring awareness to this uncombable hair syndrome and hopefully, we can get more information,’ Katelyn said.

‘If you think your kid might have it, go inquire and ask questions and be your child’s advocate.’

Schoolgirl, 6, has to bat off strangers who want to touch her frizzy locks or call her untidy 

ByClaire Toureille For Mailonline

 

Six-year-old Florence Patterson, from Newcastle, has had fuzzy hair since she was a tot due to a uncombable hair syndrome.

Florence’s parents Jill Peddie-Jones, 43, and Kyle Patteson, 49, say they have to face rude comments from strangers who have been heard exclaiming ‘look at the state of that child’ — without thinking that it is a medical condition.

Some even try to grab and touch little Florence’s hair for themselves without asking — forcing her mum and dad to urge her to ‘tell them off’.

However, Jill and Kyle are teaching Florence to embrace her bushy mane and adorable photos show the youngster proudly showing off her luscious locks in her uniform on her first day back at school.

Six-year-old Florence Patterson, from Newcastle, has had fuzzy hair since she was a tot due to a uncombable hair syndrome 

Jill, who works as a consultant, said: ‘Florence is aware that everyone stares at her.

‘Strangers touch her or grab her hair so we’ve taught her to tell them off and tell people that they can’t touch her. It’s been pointed out that her hair is similar to Einstein’s.

‘We get quite a lot of derogatory comments about how we should have brushed her hair or comments like “look at the state of that child.”

‘It does make you angry, but you have to walk away,’ she said. ‘It was strange after lockdown, when we started going out again, because I had forgotten how much attention she gets.

‘Wherever we go, people walk past with their mouths wide open. We do get nice comments as well but most of the negative attention she gets is from adults, they aren’t as accepting as kids.

‘Everyone in the area knows her as the baby with the hair.’

Florence’s mother Jill Patterson said she’s had to teach her daughter, pictured, to fend off strangers’ unwanted remarks and attention 

Jill revealed that prying people try to touch Florence’s hair without permission or comment on her looks 

Lawyer Kyle added: ‘Florence is confident, that’s how we’ve brought her up.

‘She’s always attracting attention whether it’s wanted or unwanted so she needs to be prepared for that in later life.

‘We don’t want it to define her but we know that some people will define her by her hair so she just need to embrace it.

‘It’s part of her personality. People have accepted her at school and she’s got loads of friends because her personality shines through.’

The year one pupil has three sisters, Laura, 20, Amelia, 15, and Heidi, 12, none of which have the syndrome.

Her father says trying to run a comb through Florence’s hair is impossible but the family have found their own way of managing it.

Kyle said: ‘[Combing her hair] is impossible to do.

‘We’ve found our own way to manage it which is to wash it in the bath, not in the shower because it doesn’t soak up water and will stay bone dry, towel dry it, leave the conditioner in, scrunch it and pick out all of the dreadlocks which takes ages but the next day she’ll have the most fabulous, blonde curls.

Styling Florence’s hair is a challenge for Jill, but she said her six-year-old was growing confident, and proudly posed in her school uniform ahead of the new term, right

The six-year-old’s mane is bushy and knotty, and in spite of Jill’s best efforts, it had never been tamed 

Kyle said it is no use washing Florence’s hair in the shower because it doesn’t soak up the water and stays dry 

‘Then the next day it’s frizzy again.If you try to manage it in a way that you’d manage normal hair, you’re fighting a losing battle.

‘We’ve also been advised not to do that because her hair just comes out and it’s very uncomfortable for her,’ he went on. ‘The condition also makes her nails grow incredibly fast. We have to trim them once or twice a week.’

Florence has had frizzy hair since she was one but she was diagnosed when she turned three after it was spotted by a doctor who thought the cause could be something more serious. 

Jill said: ‘We noticed quite early on that her hair was unusual, probably when she was around one but we just thought it was funny.

‘When she was about three, we were selling a table on Gumtree and the man who came to pick it up was a GP and he suggested that we take her to a doctor to get checked out.

Pictured left: Florence in her school uniform. Right; the six-year-old with temporary dye in her hair 

Jill said she and her husband were reaching Florence to ignore people’s rude comments and to tell them not to touch her 

‘He thought she had a different syndrome so he thought it was important to get her heart and eyes checked but she was diagnosed with Uncombable Hair Syndrome which just affects her hair and nails.’

Kyle added: ‘Her hair doesn’t grow that fast but its very thick, which makes her overheat.

‘It wasn’t noticeable when she was born but when she was about one, it started sticking up in different directions.

‘It was just part of her personality.

‘Luckily Florence’s condition isn’t more serious but if there are parents out there thinking their child might have the condition they should go to the GP because it could be something more serious.’ 

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