Alopecia, let’s talk about it! This is how a recent social media post by local mother Debbie Hong began as she hoped to educate and raise awareness about the autoimmune disease that affects her son.
“While I never condone violence, what happened last night (the Oscars) got people talking about alopecia, which I’m grateful for,” she wrote. “My 14 year old son has alopecia areata. It was really difficult for him. For me, I just admire him for being so brave and facing this without hesitation. I watch him walk through the crowd, to church or school, with his head held high and his eyes straight ahead. I also look at the people around him, and that’s where my heart sinks. People watch. 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 Oscars after Rock made a joke about Smith’s wife’s baldness. Jada Pinkett Smith has alopecia.
Hong said she felt people weren’t informed about alopecia areata and that this event was an opportunity to help spread useful information.
Alopecia areata is an autoimmune skin disease that affects 6.8 million people in the United States. It causes hair loss on the scalp, face and sometimes other parts of the body. Although reactions to the disease are different for everyone, many people with alopecia areata experience feelings of grief, anxiety, loss, fear, embarrassment, loneliness and anger, according to the National Alopecia Areata Foundation.
Hong’s son, Timmy, started showing signs of the disease when he was four years old. “I took him to a pediatric dermatologist and she told me he had alopecia. There wasn’t really any treatment. It could affect a small spot or affect all the hair on his head.
About a year after the Hongs noticed the first stain, Timmy’s hair started to grow back. “He didn’t have any more problems until last summer and there was a spot and he kept getting bigger,” Hong said.
Now 14, Timmy said he was now recognizable. “It looked like a weird haircut, so I decided to shave a few months ago,” he said. “It wasn’t really a problem for me when I was a kid. But now that I’m in college, it’s gotten a little worse. It was difficult for self-confidence.
Because the condition doesn’t affect anything other than the hair, Timmy said he thinks it shouldn’t be so bad for others, but, despite everything, he’s been getting feedback. “It’s kind of weird when people come up to me asking 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 okay,” he said. “When they ask about my hair, I’m pretty 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’s just an ordinary kid who you can talk to like a normal kid. There’s nothing wrong with him. He’s not sick. He’s not scary,” Debbie said. “There’s no pain associated with it. He loves basketball. When you talk to him, look at his eyes, instead of looking at what’s different. He has beautiful eyes.”
It was hard for Debbie Hong to watch her son go through this, but she also saw something positive.
“I think it made him more aware of the struggles other people are going through and more sensitive to how to treat other people. He will stand up for anyone who is mistreated,” she said. “Having alopecia is a very obvious condition. Others don’t have obvious things, but he’s really good at defending them.
One way Timmy helps others is to hold a hot chocolate sale every January to raise money for Tabitha’s Way Food Pantry. For the past six years, Timmy has hosted the event in Pleasant Grove, raising thousands of dollars.
For more information on alopecia, visit National Alopecia Areata Foundation or Children’s Alopecia Project. People can also check out Utah State University basketball player Brock Miller’s Instagram account @alopecia_family.
“The more people who know, the more supported he feels and that’s always a good thing for any difficulties people might have,” Debbie said.