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
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.’
