Local mom wants to educate about alopecia
Let’s talk about Alopecia! That is how a recent social media post by local mother Debbie Hong began as she hoped to educate and bring awareness to the autoimmune disorder that affects her son.
“While I never endorse violence, what happened last night (The Oscars) has got people talking about Alopecia, which I am grateful for,” 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 watch him walk through a crowd, or at church, or into school, with his head held high and his eyes straight forward. I also watch the people around him, and that is when my heart sinks. People stare. They stare 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 that she feels like people are uninformed about alopecia areata and this occurrence is an opportunity to help spread useful information.
Alopecia areata is an autoimmune skin disease that affects 6.8 million people in the U.S. It causes hair loss on the scalp, face and sometimes other areas of the body. Though 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, first began showing signs of the condition when he was four years old. “I took him to a pediatric dermatologist and she said that he had alopecia. There wasn’t really a treatment. It could affect one little spot or affect all of the hair on his head.”
About a year after the Hongs noticed the first spot, Timmy’s hair started to grow back. “He didn’t have any problems again until this last summer and there was a spot and it kept getting bigger and bigger,” Hong said.
Now 14-years-old, Timmy said that it was now recognizable. “It looked kind of like a weird haircut so I decided to shave it 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 middle school, it has gotten a little bit worse. It has been hard for self-confidence.”
Because the condition does not affect anything except hair, Timmy said he feels like it should not be that big of a deal to other people, but, still, he gets comments. “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 afraid to because they think it’s rude, but if they ask respectful questions, it’s not awkward,” he said. “When they ask questions about my hair, I am pretty comfortable. It would be okay for someone to ask why I don’t have hair.”
Hong wants people to know that it is important to not stare. “Timmy’s just a regular kid that you can talk to just like a normal kid. There’s nothing wrong with him. He’s not sick. He’s not scary,” Debbie said. “He doesn’t have pain associated with it. He loves basketball. When you talk to him, look at his eyes, instead of looking at what is different. He has beautiful eyes.”
It has been difficult for Debbie Hong to watch her son go through this, but she has also seen something positive.
“I think it’s made him more aware of the struggles that other people are going through and more sensitive about how to treat other people. He will stick up for anybody that is mistreated,” she said. “Having alopecia is a very obvious condition. Others don’t have obvious things going on but he’s really good at advocating for them.”
One way that Timmy helps others is by holding 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 in Pleasant Grove, raising thousands of dollars.
For more information about alopecia, visit National Alopecia Areata Foundation or Children’s Alopecia Project. People can also look to the Instagram account of Utah State University basketball player Brock Miller, @alopecia_family.
“The more people that know about it the more support he feels and that is always a good thing for any struggles that people might have,” Debbie said.