Signs of the genetic disorder appear in ages two through 12, according to the NIH — which means that children whose families have a history of the condition are most prone to it. Take Shilah Calvert Yin, who was diagnosed with the condition at seven years of age – and has handled it like a champ. She spreads awareness for the rare condition on Instagram, where she’s garnered over 20,000 followers. “It’s not ordinary and it’s not boring like everyone else’s,” she said in an interview about her condition. I think my friends wish they had hair like mine.”

And there’s Locklan Samples, a toddler from Georgia whose mom, Kate Samples, runs an Instagram account aptly named @uncombable_locks. After bringing him to a pediatrician who was unfamiliar with the condition, he was sent to a specialist who diagnosed him with UHS. 

Their philosophy is similar to that of Shilah’s. His mom tells Allure that they believe it’s a “gift” because “everywhere we go, Lock has the ability to make people smile.”

And the mom has his hair-care regimen down to a science. “Lock’s hair is extremely soft — it feels like a baby chick,” she says. “We wash his hair about twice a month and use a leave-in conditioner — It’s a 10! Miracle Leave-in specifically — to help brush through it.” 

Causes of Uncombable Hair Syndrome

Uncombable hair syndrome is caused by “genetic changes in the genes PADI3, TGM3, and TCHH,” explains Dr. Cheng. “These three genes code for proteins that are involved in the formation of the hair shaft.” Due to these genetic mutations, those with the condition are more susceptible to breakage than those without, says Dr. Garza.

It’s identified via a “genetic test and an examination of a hair sample through electron microscopy,” Dr. Garza continues. What they’re looking for?  Dr. Cheng says that those with uncombable hair syndrome have triangle-shaped hair shafts, with “grooves or canals that run along the entire length of the strand.”

Can Uncombable Hair Syndrome Be Cured?

Uncombable hair syndrome cannot be cured. There are no formal treatments for the rare condition because “the hair shaft abnormalities are programmed into a patient’s genetics,” says Dr. Cheng. That said, it has been shown to improve with age, typically starting in puberty.

There have been studies testing the potential benefits of oral biotin supplements in improving the hair quality of those with uncombable hair syndrome, such as a 2007 study that saw benefits in the hair’s appearance. Nonetheless, there is a lack of evidence to support it as a viable treatment option.