Declan Taylor and Caleb Harper recently worked together to give a presentation to students at Compass Elementary school on alopecia, an auto-immune disorder that causes hair to fall out in clumps. Declan, a student at Compass Elementary and Caleb, a student at Platte County High School, both experience alopecia, which is a condition that results in hair loss, which is different for each individual.
The boys worked together with the help of counselor Avery Holsinger, to present their information on alopecia and answer questions from students in the audience.
Compass Elementary plans to use this presentation as a model for future student-led presentations in order for students to better understand each other.
Caleb was diagnosed with alopecia when he was 2 years old and has had it for 14 years. He describes it as an auto-immune disorder that fights the hair like it’s a foreign invader and causes the hair to fall out.
Declan was also diagnosed at age 2. He is now 10 years old.
The worst effects for Declan is that he is bald, but he says it doesn’t prevent him from doing things.
“The worst effects would be the insensitive names people have called me but other than that alopecia does not affect my life,” Caleb said.
Caleb had always wanted to educate others about alopecia, and when the opportunity to host a presentation to explain it to other students came up, he knew he wanted to help Declan.
Declan knew it was time to share his experience with other students. “I spoke with my parents and felt I was old enough now to explain why I am bald,” Declan said.
The students asked Declan and Caleb about how alopecia affects them and if there was a treatment for it.
Caleb believes it’s a good thing to explain things like this to fellow students and friends so that they understand it and if something like this happens to them, they can then deal with it without being fearful. Some of his friends even educate others about alopecia now.
“It’s good to understand what it is,” Declan said. “Students asked how long I’ve been bald and will my hair ever grow back. I have to be careful in the sun and cold weather. I need to wear sunscreen on my head in the summer and a winter hat in cold weather.”
Alopecia can affect anyone regardless of age and gender, although most cases occur before the age of 30. It often develops over the course of just a few days. There is no cure for it.
“There really isn’t a treatment,” Caleb said. “Some people respond to topical steroids but there are dangerous side effects and if there are results they are usually temporary.”
The biggest challenges Caleb, who is a sophomore at Platte City High School, has dealt with over the years have been people saying unkind and mean things about his hair, but his parents have been an enormous help for him.
“They are always there for me whenever anything happens,” Caleb said.
Declan, who is a fourth-grader at Compass Elementary school, said his parents have always helped him also, and they have been extremely encouraging.
“Being bald is just a part of my life.” Declan said. “It’s just part of me, but I am more than just being bald. I think the biggest challenge is having people see beyond it and get to know me.”
Declan’s school counselor, Avery Holsinger, has also helped him tremendously.
“She helped me prep for the presentation,” Declan said. “She also helped me with ways on how I can explain to other kids why I am bald.”
Both boys have learned a lot about alopecia over the years. One of the interesting experiences for Caleb has been discovering Alopeciapalooza, which is a childrens with alopecia camp for families.
“I was able to attend Alopeciapalooza in Las Vegas and met children of all ages living with alopecia,” Caleb said. “I even got to meet celebrities with alopecia.”
Declan has found that his hair sometimes grows in patches and it goes in phases, where sometimes it can grow a lot, and then fall back out.
“Sometimes I lose my eyebrows and eyelashes too,” Declan said.
Caleb and Declan will not let alopecia affect their future plans. Caleb would like to be a stock investor and Declan plans to become a computer technologist and work with artificial intelligence.
They would be open to giving other talks and presentations and answering more people’s questions.
“I love teaching people about it and presenting,” Caleb said.
For other people who have alopecia, Caleb’s advice is, “Try not to let it get to you, but the way you respond to it is important.”
Declan urges people to stay strong. “Don’t feel bad when people make comments. They don’t understand, and it’s OK to talk about it.”