A Georgia mother is raising awareness after her son was diagnosed with uncombable hair syndrome, a super-rare genetic condition that causes hair to grow out in all directions, making it impossible to brush down or flatten.
When her son, Locklan, started to grow hair at around five months old, Katelyn Samples and her husband assumed the strange texture was just a sign that it would be curly. She didn’t think anything of it until she received an Instagram message from a stranger who saw a photo of her son and asked if he had been diagnosed with the condition, Good Morning America reported.
“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?” Samples told GMA.
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 pediatric dermatologist at Emory in Atlanta and that’s where we were able to get the diagnosis.”
According to WebMD, only about 100 cases of the rare genetic condition have been reported worldwide, though there could be more unreported cases. It usually affects children before the age of 3, but it can appear in children as old as 12. It tends to improve, especially during puberty.
Since Locklan’s diagnosis, Samples has been sharing his story and photos on Instagram.
“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,” Samples said to GMA. “If you think your kid might have it, go inquire and ask questions and be your child’s advocate.”
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