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All of us may feel like we experience “uncombable hair syndrome” at one point or another. Meet a 7-year-old girl who lives with the real thing.
Shilah Yin is one of only about 100 people in the world known to have the genetic condition. Uncombable hair syndrome is characterized by dry, frizzy hair that’s “disorderly,” stands out from the scalp and can’t be combed flat, according to the National Institutes of Health. The hair doesn’t grow downward, but out from the scalp in multiple directions, the agency notes.
“Shilah loves her unique hair, but that has come from constant positive reinforcement at home from friends and family,” her mom Celeste Calvert-Yin, who lives in Melbourne Australia, told TODAY via email.
“As a little, little girl she often told us she was like a unicorn as they are very special and unique just like her. It brought a tear to our eye.”
Shilah was born with ordinary brown hair, but the family noticed a strawberry blond fuzz peeking through when she was about 3 months old. From then on, it kept growing straight out and became even blonder. It has never grown past its current length since Shilah turned 2, her mom said.
In fact, the condition usually appears in childhood and the affected kids have silvery-blond or straw-colored hair, NIH notes. The amount of hair is normal, but the strands often grow slowly. Mutations in certain genes that are involved in hair shaft formation appear to be the cause.
It’s often inherited, but Calvert-Yin said there’s no history of it in the family. Shilah’s 9-year-old brother Taelan has brown hair that’s completely straight. The family didn’t even know about the syndrome until last year.
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Shilah noticed she was different when she was about 4, and the attention from other kids and adults made her uneasy. That’s when her family told her being different was awesome, Calvert-Yin said.
“Since then she has never really looked back… and now thrives on all the attention,” she noted.
“Shilah has the most confident, individual personality I know and it just adds to her character.”
Still, there can be challenging moments. People sometimes take photos of Shilah and touch her hair without permission. The family hears constant comments from strangers that can be offensive and hurtful at times.
Now that her parents know about uncombable hair syndrome, they let others know about it. Most people tend to think they’re joking, “but we say, ‘Just Google it and you will see,’” Calvert-Yin said.
Managing Shilah’s mane is another challenge. The little girl hates her morning hair routine, which can last 10-20 minutes, her mom said. She sprays a detangling solution and combs Shilah’s hair very gently with a wide-tooth comb.
“Her favorite part of her hair routine is when her dad blow-dries it for her. Together they manage to comb and dry her hair so that it looks super fluffy. Shilah loves it,” Calvert-Yin said.
Shilah prefers to wear her hair loose or in braids. Clips or headbands against her scalp are painful, so ponytails are out.
The family has begun documenting Shilah’s experience on Instagram to share how special she is and make others aware of the syndrome.
Her parents don’t know how her hair will change as she grows up, though the condition usually improves over time, with hair returning to normal by adolescence, NIH notes.
“Shilah no longer feels alone or isolated and for that we are very grateful,” her mom said. “There are others around the world just like her, [and] now she knows that.”