Speaking in front of a large group of people can be intimidating, particularly if the presenter is young and he looks quite different from the rest of the crowd.
But for 8-year-old Jesse London, who was diagnosed with alopecia about three months ago, addressing the school assembly gave him an opportunity to gain acceptance and raise awareness about a little-known condition that causes hair loss.
Alopecia is an autoimmune disease that attacks hair follicles.
A soft-spoken child, Jesse shared his story with 700 students during a recent assembly at Woodland Hills Elementary School.
In an interview, Jesse said he wanted to talk to the students to raise awareness about alopecia and to encourage them to accept people with differences.
“If you see someone that is different, then you should be kind to them and you shouldn’t stare at them,” the second-grader told The Acorn.
According to the National Alopecia Areata Association, the disease results in the loss of hair on the scalp and sometimes elsewhere on the body. It typically starts with one or more small, round and smooth patches on the scalp but can progress to total hair loss in some cases.
The condition can happen to anyone at any age.
“It was very scary when it first started happening. It was very confusing and weird,” said Jesse’s mother, Tali London.
“One morning you wake up and your pillow is covered with hair, and then more hair falls out when you wash it and when you brush it, and it keeps falling out until you have no hair,” she said.
Jesse’s hair loss was rapid. At first he had his hair cut into a mohawk, but when that began falling out in patches he asked his parents to shave it all off.
Alopecia is not contagious, and other than losing his hair Jesse is completely healthy.
There are three types of alopecia: areata, in which the hair loss is spotty; totalis, which is complete loss of hair on the scalp; and universalis, which is the loss of hair all over the body.
Jesse’s condition only affects his scalp; he still has his eyebrows and eyelashes and other body hair.
He hasn’t let his condition affect his self-image.
“It’s just hair loss,” said Jesse, who enjoys playing sports and spending time with his friends. “Without my hair I never have a bad hair day.”
After Jesse was diagnosed, his family banded together to learn more about alopecia and to educate others about the condition.
“We didn’t know anyone with alopecia and felt very alone,” said London, who contacted a nonprofit organization called the Children’s Alopecia Project that provides support to children and families dealing with the illness.
Recently, the Londons and several other families with kids affected by alopecia attended a taping of NBC’s “American Ninja Warrior” to meet Kevin Bull, a former collegiate track and field athlete and a contestant on the show. Bull has alopecia universalis.
Networking with others who face the same circumstances allowed Jesse to feel better about himself and prepared him to respond to people who stare or who make fun of him.
During the school assembly in Woodland Hills, Jesse’s teacher, Andrew Chin, revealed his freshly shaved bald head to the entire school as a show of support for Jesse.
To cope with the occasional teasing, the boy said, he finds strength in numbers.
“My friends Dorian, Harrison, Caden and Cameron, and my teacher of course, they’ve all been by my side and supporting me the whole time,” said Jesse, who hopes to make educational presentations about alopecia at other local schools soon.
“I don’t think there is enough awareness. I want to be the one to make awareness for alopecia,” he said.
His mother is proud of how he is handling his condition.
“Jesse took control of a situation that he had no control over,” she said.
There is no cure for alopecia but there are different treatments, said London, who works for a dermatologist in Calabasas. She said she is trying various remedies to stimulate her son’s hair growth.
Alopecia symptoms can come and go, and in some cases the hair grows back on its own with no further problems.
Jesse lives in Woodland Hills near Calabasas with his parents, Derek and Tali London, and his older brother, Dylan, 12, who attends A.C. Stelle Middle School.