Charlotte Foster
Caring

Meet the boy with uncombable hair syndrome

A mother from the US state of Georgia is raising awareness for a unique condition, while also spreading the joy of her 1-year-old son. 

Katelyn Samples told Good Morning America that her son Locklan was diagnosed with the very rare uncombable hair syndrome after getting a message from a stranger on Instagram. 

“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 recalled.

She added, “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 paediatric dermatologist at Emory in Atlanta and that's where we were able to get the diagnosis.”

Uncombable hair syndrome is a rare hair disorder and genetic condition that usually affects children between the ages of three months and three years. 

According to the NIH, only about 100 cases have been reported in medical studies but experts say there could be more unreported cases.

“People might just be like, ‘Oh, my child has unruly hair or hair that's difficult to tame, but they might not have sought a medical professional, like a pediatrician or dermatologist to formally diagnose the condition,” Dr. Carol Cheng, a paediatric dermatologist at UCLA Health told Good Morning America

According to Dr. Cheng, those with uncombable hair syndrome, which is also known as spun glass hair, can have hair that is difficult to manage due to growing in all directions, as well as being straw-coloured or have a dull texture. 

Uncombable hair syndrome is diagnosed when a specialist completes a genetic test and an examination of a hair clipping with a special kind of microscope. 

Despite the name of the syndrome, Katelyn says she can still somewhat manage Locklan's hair, and is so far relatively low maintenance. 

“It can get matted easily. It is very fragile. … It can get tangled and I do have to be careful," she said.

"That would be an example of a time I actually would wash it because I very rarely wash his hair. Just doesn't need to be, it doesn't really get greasy.”

Katelyn said a lot of people, both online and in person, get curious about Locklan's hair and make unusual comments. 

“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," Samples 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."

While there is no formal treatment for uncombable hair syndrome, the abnormalities tend to resolve themselves with age.

“Interestingly, this condition does get better with age. So after puberty or into adulthood, typically the hair condition does get better,” Dr. Cheng noted. “It doesn't stay with them for their entire life.”

Image credits: Instagram @uncombable_locks

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caring, Locklan Samples, uncombable hair syndrome, Instagram, toddler