If there was one good thing to come out of the controversy at last week’s Oscars when Will Smith hit Chris Rock after he made a joke about Jada Pinkett Smith’s hair loss, it’s that it put a spotlight on alopecia areata.
Alopecia is a disease that occurs when the body’s immune system attacks hair follicles, a condition Pinkett Smith has been suffering from for four years.
According to the National Alopecia Areata Foundation, about 6.8 million people in the United States either have or will have the condition at some point in their lives. Men and women of all ages and races can get it, but onset most often occurs in childhood.
It’s a cause very close to the hearts of Naperville dads Mike Isaac and Adam Stachowiak. Their 8-year-old son Kaleb was diagnosed when he was 2 years old. I asked the family what they thought of Rock’s joke and what it’s like to live with the disease.
“I knew Jada Pinkett Smith had alopecia because I’ve read several articles by her in my support groups,” said Isaac. “When I first saw it, I was disappointed Chris Rock chose to make a joke about it, make it part of a comedy routine rather than taking the opportunity to educate the world in regard to this disease. It metamorphosized into a violent event that’s taken over media outlets, rather than educating the world.”
Stachowiak believes there is still time for Smith to turn things around.
“The best that could happen would be if he took the opportunity to make a 30-minute documentary about alopecia,” he said.
Although Isaac does not condone Smith’s attack, he understands why he did it.
“As parents of a child we can absolutely relate to the anger he felt,” he said. “But as parents we tell our boys you are in control of your own actions and sometimes you don’t make the right ones. I think he made a huge mistake.”
The first time the two dads realized Kaleb had a problem was when he was a toddler.
“We had patterned sheets at home so initially didn’t notice his hair was falling out,” Stachowiak said. “But one day we went away and had white sheets and it showed up. I asked him if he was pulling it out.”
Within 60 days he had lost so much hair Kaleb asked if he they would shave off the remainder. It hasn’t grown back since and isn’t likely to.
“There’s no pain. It just hurts my feelings a little bit,” Kaleb said.
Alopecia can be hereditary, although random how it manifests itself.
“It makes me unique and different and gives me the opportunity to educate other people about alopecia,” he said. “It’s kind of sad; bad and sad mixed together.”
Although its tough to be a child with a condition like this, Kaleb is resilient and has retained his sense of humor.
“It’s easy to find me if I get lost,” he quipped.
Kaleb, who is about to start a new school as the family is moving from Naperville to Lake Geneva, carries books to educate other children.
“I have a book called ‘Where’s Your Hair, Hannah?’ that I lend to other kids or ask the teacher to read to the class,” he said.
Isaac said the most common reaction they get is people think Kaleb is undergoing cancer treatment.
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“People don’t normally comment but sometimes in a restaurant they’ll send over a dessert anonymously,” he said. “Any comments aren’t negative and any time we get the opportunity to educate people we do. When we’ve explained, some people even think alopecia is a form of cancer but it isn’t.”
Isaac said having alopecia has forced Kaleb to talk about it publicly all his life.
“He doesn’t know any different,” he said. “Socially we use hair as part of our persona. I can understand how somebody who lost their hair later in life would feel with a different look suddenly, but for Kaleb it has forced him to brave and educate people.”
Stachowiak said they forget it’s an issue until Kaleb has a hard time.
“I think that’s when it hits Mike and I,” he said. “Kaleb doesn’t always talk about it, but we notice it. He is who he is and when he is having a hard time, we have a hard time. We give him a hug and help him work through it.”
Isaac says they’re used to being a conspicuous family.
“As a parent you want to solve the problem and we can’t,” he said. “We cope with a lot of open dialogue. His brother is super.”
I asked Kaleb if there was anything he couldn’t do because of his condition.
“I can’t wash my hair,” he replied with a twinkle in his eye. “I can’t have a mohawk, I can’t have haircuts and I don’t get static in my hair.”
His role model is Kevin Bull, an American Ninja Warrior who also has alopecia.
“I want to a Junior American Ninja Warrior,” he said. “But you have to be nine for that and I’m only eight.”
I asked him if he had any advice for other sufferers.
“I would say cheer up and be glad it doesn’t hurt,” he replied. “It doesn’t hurt your body, but it might hurt your feelings.”
Hilary Decent is a freelance journalist who moved from England to Naperville in 2007.