Last summer, Katelyn Samples posted a photo of her youngest son, Locklan Samples, on Instagram. Then a stranger texted him. He asked if his then 10-month-old son had been diagnosed with unmanageable hair syndrome.
The 33-year-old mother from Roswell, Georgia, was worried.
“At first you see the ‘syndrome’ and you’re like, ‘Oh my God,’ is there something wrong with my baby? Is he in pain or what?” she said on ABC’s Good Morning America.
Specimens started googling and called her pediatrician. The doctor told her they had never heard of the syndrome, but referred her to a pediatric dermatologist at Emory Healthcare in Atlanta.
There, Locklan was diagnosed with unmanageable hair syndrome, or UHS.
A rare genetic disorder of the hair shaft, UHS is characterized by messy silver-blonde or straw-colored hair. The hair, sticking out from the scalp, cannot be combed flat. The syndrome usually appears in children between three and 12 years old.
“When you look under the microscope, you can see that instead of having cylinder-shaped hairs…the hair shaft is actually more triangular,” Dr. Carol Cheng, a pediatric dermatologist at UCLA, told ABC. Health.
“In the triangle there is [are] those little grooves that go up and down along the axis of the hair shaft, which is why it really makes it unmanageable.
Scientists only know about 100 cases and according to the National Institutes of Health, there is currently no definitive treatment. However, the condition usually improves or resolves once puberty begins.
Samples said her son’s hair had ‘combing’, adding: ‘It can easily tangle. It’s very fragile… It can get tangled and I have to be careful. This would be an example of a time when I would wash him because I very rarely wash his hair. Just doesn’t need to be. It doesn’t really get greasy.
In his early research, Samples noticed that information was scarce. However, she quickly found a Facebook group created just for those with UHS experience. The group exchanges information on hairstyles, products and treatments.
“It’s been extremely helpful…it’s been heartwarming,” Samples told The Washington Post.
The only possible symptom Locklan has experienced is “extremely sensitive skin,” Samples said, adding that other parents in the Facebook group have noticed it in their children. Sometimes, she says, children with UHS can overheat.
After Locklan’s diagnosis, Samples took her husband’s advice and started @uncombable_locks, an Instagram account featuring photos of Locklan and her hair.
Seven months later, users have given their support to Locklan.
One wrote: “Love her so much!!! Would love to see all the other kids in a picture together who have UHS.
Another user wrote, “Love her fuzz top and mullet in the back. Should we just say that it is rocker chic?
Samples describes the attention as “joy-filled and extremely kind”. People sometimes ask to take pictures with Locklan, she said, adding that she doesn’t mind “as long as the baby is happy and vibes with him.”