After Katelyn Samples posted a photo of her 10-month-old son on Instagram, a stranger sent her a message with an unnerving question: Had her boy been diagnosed with uncombable hair syndrome?
Samples focused on that word. The worries about Locklan came quickly then: Was there something wrong with him? Was he in pain?
“I’d never heard of it,” the 33-year-old mother in Roswell, Ga., told The Washington Post in an interview. “I kind of freaked out.”
Although she took him to his pediatrician, uncombable hair syndrome is so rare – scientists know of only about 100 cases, according to WebMD – that the doctor hadn’t heard of it, either, forcing the Samples family to visit a specialist in Atlanta. A pathologist there confirmed the Instagram stranger’s hunch by diagnosing Locklan with uncombable hair syndrome, or UHS.
Samples’s fear dissipated; Locklan was not in danger or pain. Uncombable hair syndrome is a rare genetic condition that shows up in children between the ages of 3 months and 12 years, according to the National Institutes of Health and WebMD. The genetic abnormality produces dry, frizzy locks that are silvery-blond or straw-colored. The hair sticks out from the scalp and can’t be combed flat.
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Samples said that each strand of Locklan’s hair has a “crimp” in it.
“It can’t be tamed,” she said. “Nothing can fix it.”
In the six months since Locklan’s diagnosis, Samples started an Instagram account dedicated to her now 17-month-old boy and his hair – “uncombable_locks,” the brainchild of her husband, Caleb. Her ambition is threefold: encourage people to embrace what makes them different, urge those who might have uncombable hair syndrome to get diagnosed so scientists can better understand it, and provide information she wishes she’d had when that stranger first mentioned the condition.
“Because there’s not a lot of confirmed diagnosis out there, there’s in turn not a lot of information,” she told The Post.
When Samples first started scouring the Internet for details, one of the best resources she found was a Facebook group dedicated to the condition. Veteran UHS parents and people with it have shared tidbits about what could happen to Locklan’s hair as he gets older, what hairstyles have worked for them and their favorite products.
“That has been extremely helpful,” she said. ” . . . It’s been comforting.”
Samples said her efforts to inform others about UHS and encourage people to seek diagnoses are working. Parents from around the world are sending pictures of their children’s hair almost every day, wondering if it’s the byproduct of UHS. The photos have come from as close as within Georgia and as far away as Ireland, England, Poland and Australia. One mom, after her brother sent her a news article about Samples and Locklan, had her son diagnosed with UHS. The women have developed a friendship.
“We’ve been able to connect, which has been really cool,” she said.
Aside from the syndrome, Locklan is developing normally, she said. The only possible symptom is his “extremely sensitive skin,” something she said other UHS parents in the Facebook group had encountered. She’s also read that some children diagnosed with the syndrome can overheat, something she’s noticed in Locklan, although she’s not sure whether it’s tied to his condition.
Locklan’s hair gets a lot of attention when he’s in public, Samples said. People are curious and nearly everyone is “just filled with joy and extremely kind,” Samples said. Some even ask to take photos with him, which Samples is fine with “as long as the baby is happy and vibing with it.”
“For the most part, it’s been very, very positive,” she said.