- Katelyn Samples received a message on Instagram asking if her son has unmanageable hair syndrome.
- People with UHS have hair that grows in a triangle shape.
- UHS is usually diagnosed between 3 months and 12 years of age.
- Chemical hair treatments can help, but would only be temporary.
A mother posted a photo of her baby on Instagram last summer when a stranger sent her a weird question: Has your son ever been diagnosed with uncombable hair syndrome?
Katelyn Samples’ 16-month-old son Locklan had a head full of blonde locks with one caveat. It stood up straight and couldn’t be combed flat.
“We get feedback at all levels and we get it every day,” she told USA TODAY last month. “Everyone asks to touch it.”
Samples had never heard of the condition before the post and decided to google it.
After speaking to a pediatrician and being referred to a specialist at Emory Hospital in Atlanta, Locklan was confirmed to have the rare genetic condition which has only around 100 confirmed cases.
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Dr. Luis Garza, professor of dermatology at the Johns Hopkins School of Medicine, told USA TODAY that unmanageable hair syndrome is ultimately not a dangerous condition.
What is Uncombable Hair Syndrome?
Uncombable hair syndrome is a genetic condition where people have a mutation in their DNA that causes changes in the way hair grows, according to Garza.
“Normally hair grows in a cylinder shape and if you cut the bottom of it you would see a circle,” he said. “With this condition when you cut it, it doesn’t look like a circle, but looks like a triangle with a funny groove.”
Because the hair grows in a strange pattern, the hair becomes unmanageable, hence the name of the syndrome. The syndrome can affect other places where hair grows on the body, but because this hair is shorter, it is usually only noticeable on the scalp.
It’s a rare condition, likely affecting less than 1 in 1,000,000 people, according to Garza.
How does anyone have UHS and is it dangerous?
One or both parents can carry the genetic mutation and pass it on to their children.
The syndrome usually appears very early in life and parents may be able to tell when an infant’s hair begins to grow.
According to the National Center for the Advancement of Translational Sciences, the condition can become apparent between 3 months and 12 years of age.
“The good news is that most patients who have it don’t have any other problems,” Garza said. “In fact, it might improve slightly over time.”
In very rare cases, a small group of people with UHS may experience other symptoms like skin, tooth and nail problems due to the genetic mutation affecting the same building block as hair, according to Garza.
Can treatments help and does race play a role?
Garza said theoretically chemical hair treatments or straightening could help the condition, but they would all be temporary.
“What people sometimes say is that hair growth might help pull more hair out,” Garza said.
According to Garza, almost all of the literature on UHS relates to cases of lighter-skinned people.
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That’s not to say it doesn’t occur in people with darker complexions, but people with curlier hair may not notice the condition as easily.
A hair condition primarily affecting black women called central centrifugal cicatricial alopecia — formerly known as “hot comb alopecia” — which causes death and permanent hair loss in certain areas, may be linked to UHS, according to Garza.
“People did a study on this condition and suggested that some of these women may have one of the same mutations that you see in unmanageable hair,” Garza said. “But for some reason, in black women, it feels like a totally different disease.”
Garza said the theory is very new, but people are actively researching it to better understand the disease.
Contributor: Callie Carmichael
Follow journalist Asha Gilbert @Coastalasha. Email: [email protected]