Stranger on Instagram helps mom discover son’s rare hair syndrome

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?

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 .“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, leading 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’ 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.

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.