Let’s talk about Alopecia! This is how a recent social media post by a local mother, Debbie Hong, began in hopes of educating and raising awareness about the autoimmune disorder affecting her son.
“While I never condone violence, what happened last night (the Oscars) got people talking about alopecia, for which I am grateful,” she wrote. “My 14-year-old son has Alopecia Areata. It has been really difficult for him. For me, I just admire him for being so brave and facing this without hesitation. I see him walking through a crowd, in church or at school, with his head held high and his eyes fixed. I also watch the people around him, and that’s when my heart sinks. The people look. They look hard and long. They point and whisper. Some people grab their friends and laugh.”
On March 27, actor Will Smith slapped comedian Chris Rock at the Academy Awards after Rock made a joke about Smith’s wife’s baldness. Jada Pinkett Smith is affected by alopecia.
Hong said he feels that people are not informed about alopecia areata and that this fact is an opportunity to help spread useful information.
Alopecia areata is an autoimmune skin disease that affects 6.8 million people in the US It causes hair loss on the scalp, face, and sometimes other areas of the body. Although everyone’s reactions to the disease are different, many people with alopecia areata experience feelings of pain, anxiety, loss, fear, shame, loneliness and anger, according to the National Alopecia Areata Foundation.
Hong’s son, Timmy, began showing signs of the condition when he was four years old. “I took him to a pediatric dermatologist and he told me that he had alopecia. There wasn’t really a treatment. It could affect a small spot or it could affect all the hair on your head.”
About a year after the Hongs first noticed the stain, Timmy’s hair began to grow back. “He didn’t have problems again until last summer and there was a spot and it got bigger and bigger,” Hong said.
Timmy, now 14, said he was recognizable now. “It seemed like a weird haircut, so I decided to shave it off a few months ago,” he said. “It really wasn’t a problem for me as a kid. But now that I’m in high school, it’s gotten a little worse. It’s been hard on self-confidence.”
Because the condition doesn’t affect anything except the hair, Timmy said he feels like it shouldn’t be that important to other people, but he still gets feedback. “It’s kind of weird when people just come up and ask if I have cancer and assume that’s what I have,” he said.
“It helps when people ask respectful questions. People are scared because they think it’s rude, but if they ask respectful questions, it’s not awkward,” he said. “When they ask me questions about my hair, I feel quite comfortable. It would be nice if someone asked me why I don’t have hair.”
Hong wants people to know that it’s important not to stare. “Timmy is a normal kid that you can talk to like a normal kid. There is nothing wrong with him. He is not ill. He’s not scary,” Debbie said. “He has no pain associated with it. He loves basketball. When you talk to him, look him in the eye, instead of looking at what is different. He has beautiful eyes.
It has been difficult for Debbie Hong to see her son go through this, but she has also seen something positive.
“I think it made him more aware of the struggles other people are going through and more sensitive about how to treat other people. He will stand up for anyone who is mistreated,” he said. “Having alopecia is a very obvious condition. Others don’t have obvious things happen to them, but he’s very good at defending them.”
One way Timmy helps others is by hosting a hot chocolate sale every January to raise money for Tabitha’s Way Food Pantry. For the past six years, Timmy has held the event at Pleasant Grove, raising thousands of dollars.
For more information on alopecia, visit the National Alopecia Areata Foundation or the Childhood Alopecia Project. People can also check out Utah State University basketball player Brock Miller’s Instagram account @alopecia_family.
“The more people know about it, the more support they feel and that’s always good for any fight that people might have,” Debbie said.