Washington PostWashington Post
A photo showing then-10-month-old Locklan Samples was posted on Instagram by his mother, Katelyn, in summer 2021. A stranger responded to the post by messaging her with a question about a rare genetic condition she'd never heard of: Did her baby boy have uncombable hair syndrome? (Katelyn Samples) (WaPo)

A stranger sent a message to Katelyn Samples after she posted a photo of her 10-month-old son on social media.

There is a syndrome.

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There were samples focused on that word. Was there something wrong with Locklan? Was he in pain?

The mother in Roswell, Ga., told The Washington Post that she had never heard of it.

The Samples family had to visit a specialist in Atlanta because the doctor hadn't heard of the syndrome, which is rare and only 100 cases a year. Locklan was diagnosed with uncombable hair syndrome by a pathologist there.

Locklan was not in danger or pain. According to the National Institutes of Health, uncombable hair syndrome is a rare genetic condition that affects children between the ages of 3 months and 12 years. The genetic abnormality causes dry hair that is silvery-blond or straw-colored. The hair sticks out from the skin.

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According to samples, each strand of Locklan's hair has something in it.

She said that nothing can fix it.

In the six months since Locklan's diagnosis, Samples started an account dedicated to her now 17-month-old boy and his hair. She wants to encourage people to embrace what makes them different, encourage those with uncombable hair syndrome to get diagnosed, and provide information she wishes she had when she first heard about the condition.

She told The Post that there wasn't a lot of information because there wasn't a lot of confirmed diagnosis.

One of the best resources Samples found was a Facebook group dedicated to the condition. As Locklan gets older, his parents and people with it have shared tidbits about what could happen to his hair.

She said that it has been very helpful. It has been comforting.

She said her efforts to inform others and encourage people to seek diagnoses are working. Parents from all over the world send pictures of their children's hair almost every day, wondering if it is the result of UHS. As far away as Ireland, England, Poland and Australia, the photos came from within Georgia. One mom had her son diagnosed with UHS after her brother sent her a news article about Samples and Locklan. The women are friends.

She said that they have been able to connect, which has been really cool.

Locklan is developing normally, she said. She said that other parents in the Facebook group had encountered a symptom of his extremely sensitive skin. She has read that some children with the syndrome can get overheated, something she has noticed in Locklan, but she is not sure if it is related to his condition.

When Locklan is in public, his hair gets a lot of attention. Samples said that people are curious and are just filled with joy and extremely kind. Some even ask to take photos with him, which Samples is fine with as long as the baby is happy.

She said it has been very positive.

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