Taylor McGowan is 18 months old and has uncombable hair syndrome, which makes her hair stand up straight like Albert Einstein.
Uncombable hair syndrome sounds like a made-up disease that a kid who doesn’t want to brush their hair made up, but it’s a real medical issue. The disorder only affects the hair on your scalp and is caused by a gene mutation. When one of the three proteins in your hair shaft is mutated, thanks to both of your parents, the hair is unable to stay flat.
“Her hair looks amazing, like she’s a mini Albert Einstein,” Cara McGowan, Taylor’s mom, told BuzzFeed News. “It stands completely on end.”
Cara said that they have tried everything to make Taylor’s hair lay flat but nothing works. “It can be placed in a ponytail that will often stick straight up through the top of her head,” Cara said. “We’ve tried dozens of products at this point.”
Cara said that Taylor’s hair can be damaged easily by ponytail holders and products so they try to avoid them. It’s recommended that people with uncombable hair syndrome have a very minimal hair care routine. “In some cases, constant efforts to groom the hair lead to breakage, but increased fragility is not a constant feature of the condition,” reports the U.S. Department of Health and Human Services.
Taylor’s parents first noticed her hair was different when she was 4 to 6 months old. “It was a little unique, it was fuzzy, and we expected that it would eventually fall out,” Cara said. But Taylor’s hair never did fall out.
A family member stumbled across photos of kids with uncombable hair syndrome and suggested that Taylor may have the rare disorder. “We essentially laughed it off, we thought there is no way that our child could possibly have this ultra, ultra-rare condition that only affects 100 people worldwide,” Cara said. “And we were completely wrong.”
The McGowans sent their blood samples to Regina Betz, a professor of dermatogenetics at the University of Bonn in Germany. Betz is one of the scientists who helped publish and discover that a mutated PADI3 gene causes the disorder.
Each parent has to carry the recessive mutated gene and then pass it on to their offspring. Turns out both Cara and her husband Tom McGowan were carriers of the mutated PADI3 gene and passed it on to Taylor.
People who have uncombable hair syndrome have blonde, almost white, wiry hair that grows slowly. Most people outgrow the visible symptoms when they hit puberty.
“Maybe it will resolve and maybe it won’t,” Cara said about Taylor’s disorder. “I have met both. Individuals who are now adults who appear to grown out of it — their hair has darkened and it no longer stands completely on end but perhaps it gives them a little bit of trouble — and on the other hand I’ve seen adults struggle very much with full, frizzy, hard-to-manage hair.”
