Zander Buell was born with soft, dark hair that, while a little long, was wholly unremarkable.
That changed after Zander lost his baby hair and his permanent hair grew in light, straw-like and utterly untamable.
Now 7 years old, Zander, who lives with his family in Toledo, bears a resemblance to a young Albert Einstein and constantly has people wanting to touch his hair.
“I always just described how it looks as crinkle-cut french fries,” said Zander’s mother, Elizabeth Buell.
It took several trips to the dermatologist and a round of testing at Oregon Health & Science University (OHSU) to determine that Zander’s unique hair is the result of uncombable hair syndrome: a rare genetic condition that affects the shape of hair shafts on the scalp.
“I had one doctor compare it to dimples, like a genetic abnormality,” Buell said.
While hair typically grows out of the scalp in a circular or oval shape, Zander’s hair grows in a shape closer to a triangle, Buell explained.
As a result, his hair sticks up in all directions and doesn’t yield to typical hair-management techniques. Hair dye fades quickly, hair straighteners don’t work, ponytails won’t lay flat and gel only keeps its shape for 15 to 20 minutes at most.
“You can comb it, but your comb might get stuck,” Buell said.
There are only about 100 documented cases of uncombable hair syndrome in the world, according to the National Library of Medicine.
The condition is rare enough that the doctors at OHSU who diagnosed Zander asked for Buell’s permission to share photos of Zander with the entire hospital staff to help them recognize and diagnose cases in the future.
Some cases of uncombable hair syndrome disappear by the time the child reaches adulthood, but some carry the condition for their whole lives.
While Zander has frequently asked why nobody he knows has hair like his, he does take pride in his hair.
“It makes him feel like he’s special,” Buell said.
He’s currently growing his hair out to try and style it into a ponytail to match his dad, Buell said, “But he doesn’t understand that it’s not going to look the way his dad’s hair does. It’s going to be like a blob.”
