Girl With Uncombable Hair Syndrome Rocks Her Rare Condition With Style
When a little girl from Melbourne, Australia named Shilah was born, her parents didn't notice anything out of the ordinary about her hair. It was soft and brown, just like her older brother Taelan's. But after several months, it started to grow "straight up and not flattening down," her mom Celeste Calvert-Yin recently wrote on Love What Matters.
"Others started to comment which made us even more inquisitive as to why and what was happening," Calvert-Yin shared. "'What’s wrong with her hair?' they would say. It was hurtful and sometimes quite rude, but I’m sure they were just being ignorant an insensitive."
Some people would remark, "Looks like she stuck her finger in the power socket," the mom of two noted. "Often people would even ask to touch her hair or just come up out of the blue and touch her hair," she wrote. "As a parent this would really annoy me and my husband, and we would often make it known that it was not okay. 'Do you mind? She is just a baby and we don’t go around touching your kids.' The worst was possibly people who would take pictures of Shi without even asking, and then try to pretend they weren’t when caught. I remember my husband asking many a time for people to delete what they had taken."
The parents tried various techniques on Shilah's hair before concluding that "it was a gene from our family history and that was just that." "We told people that perhaps it was a throwback to one of our family histories and people were okay with this explanation," Calvert-Yin wrote. "Or I just said she was 'blessed with her hair and born to be noticed.' That was easier for kids to understand."
As Shilah got older, her hair got longer but never grew past a certain length, her mom shared. "It would instead just snap off at the root and seemed to be quite fragile," she noted. "The knots and tangles were an everyday battle. If you tried to sort them out, she would lose quiet a lot of hair just from brushing. Many, many hours have been spent in tears trying to sort out the overnight dreads, so now she sleeps on a pure silk pillowcase, and it has made a huge difference for her."
Luckily, Shi has embraced her appearance from a young age, the proud mom explained. "She had never known any differently," Calvert-Yin wrote. "She’d make sweet remarks like, 'Just call me fuzzy. Some days I look like a lion with a crazy mane.' Both Shi and her brother Taelan were in childcare when I returned to work, which I think really helped. Kids truly do just say what they are thinking, and this helped shape and strengthen Shi. She was confident and sassy and quickly learned how to work her uniqueness to her benefit. She would tell them she was ‘magical and special,’ and they were just ‘normal and boring.’"
A even stranger likened Shi to Doc Brown from Back to the Future as she was wearing a lab coat. "‘Your daughter looks just like Doc Brown, the guy in the movie. The crazy scientist guy!’" Calvert-Yin remembered. "Others often said she had ‘hair like Albert Einstein.’ They were spot on, and it did become a bit of an in-house giggle for us."
Although people had recommended the family consult a doctor, Calvert-Yin never felt it was necessary. "It was just her hair, it was just our Shilah," she noted. "However, it came a day when Shi was in the hospital for her teeth and the doctor who was caring for her asked us a telling question: 'Are you aware of uncombable hair syndrome?'"
The doctor explained to Shi's mom that UHS was caused by a gene mutation, and it involves silvery blonde or straw-colored hair that stands up from the scalp and can’t be combed flat. "The doctor had researched UHS but have never met a child with the condition," Calvert-Yin wrote. "I was shocked, teary and excited all at the same time, finally a possible answer to all those years of questions. The doctor was just as excited."
Turns out, Shilah is one of only about 100 people in the world who is affected by UHS. According to the National Institutes of Health (NIH), it generally develops in childhood, often between infancy and age 3, but can appear as late as age 12. The condition usually improves over time. By adolescence, people with UHS might have hair that lies flat and has normal or nearly normal texture.
After an exam, the family learned that Shi's teeth have weakened enamel and break easily, and every hair on her head is affected by the condition. "We were so happy to have an answer, but it was now time to share with everyone to make a difference and to help others around the world," Calvert-Yin wrote.
The proud mom now runs an Instagram account for her daughter that boasts 14.K followers. "Comments have been both supportive and ugly at times, but it is an amazing platform to connect with those who want who support her, or somewhere they can say to their little one, ‘Look, you’re not alone. You’re not the only one and look at how this little girl rocks it!’" she shared.
She continues to be impressed by Shi's incredible, inspiring self-confidence. The mantra the tween recently shared with her mother? "You just have to love yourself, Mom. Who cares about everyone else?"