Mom raises awareness after son is diagnosed with uncombable hair syndrome

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A Georgia mom is on a mission to spread joy and raise awareness after her 1-year-old son was diagnosed with uncombable hair syndrome, a hair disorder she’d never heard of until last year.

The boy’s mother, Katelyn Samples, told “Good Morning America” that a stranger messaged her last summer on Instagram after seeing a photo of her youngest son, Locklan Samples, and asked if he had been diagnosed with uncombable hair syndrome
“At first, you see ‘syndrome’ and you're like, ‘Oh my gosh,’ like is something wrong with my baby?:mjpls: Is he in pain or something?” Samples recalled.

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.”

What is uncombable hair syndrome?
Uncombable hair syndrome is a rare hair disorder and a genetic condition that usually affects children between the ages of three months to three years, although there have been reports of cases in kids up to age 12. According to the NIH, only about 100 cases have been reported in medical studies but experts say there could be more unreported cases.

“People might just be like, ‘Oh, my child has unruly hair or hair that's difficult to tame, but they might not have sought a medical professional, like a pediatrician or dermatologist to formally diagnose the condition,” Dr. Carol Cheng, a pediatric dermatologist at UCLA Health told “GMA.”

According to Dr. Cheng, children with uncombable hair syndrome, also called spun glass hair, can have hair that grows in all directions and their hair can be straw-colored, have a dull texture, or be hard to manage.:mjpls:

uncombable-hair-syndrome-locklan-02-ht-llr-220224_1645728775474_hpEmbed_3x4_1600.jpg


A specialist can diagnose uncombable hair syndrome through a genetic test and an examination of a hair clipping through electron microscopy, a process that uses a special type of microscope.

“When you look under that microscope, you can see that instead of having hairs that are cylinder shape … the shaft of the hair is actually more in a triangular shape,” Dr. Cheng explained. “Within the triangle, there (are) these little grooves that go up and down the long axis of the hair shaft so that's why it makes it really uncombable.”

“To diagnose the condition, at least 50% of the hairs would have this abnormality, but not all the hairs have to be abnormal,” Dr. Cheng added.

For the genetic test, doctors would look for three specific genes :mjpls:that have been associated with the syndrome, she said.
 
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