Advice for Young Patients with Alopecia Areata

Peyton: Right now, I don't need too much support. My friends are just generally there for me, and so is my family. When I was first losing my hair completely, it took about 2 weeks and that was a lot of time for me. I had 1 of my friend's birthday parties and everybody was supportive. My friends and everybody else who came to the party was totally fine with it and we ended up having a great time. My family was there for me. My grandparents came over once when I was still using my wig and it was a whole thing because they hadn't seen my wig before, they hadn't seen me bald before. And they did a good job of informing them, like, she's going to have really long hair and then she's going to have no hair at all, but it's going to be OK. They did play an integral role in helping me be how confident I am today, and I'm grateful for that.

The National Alopecia Areata Foundation has these really great mentoring programs. I'm a legislative mentor myself... not really a mentor, [but] what we do is legislative work trying to get wigs covered by Medicare. But Ebony is a youth mentor, and they do great work. They get paired with younger kids who may be having struggles with alopecia mentally and emotionally and they just help them, guide them through with just helpful advice and their support. And they can blossom into real actual friendships over time, and I think that's beautiful.

For support, I would recommend just browsing around. I'm not on very much social media, but I do follow this amazing alopecian, Kylie Bamberger. And so she's a mom, she's a model. She's an alopecia advocate, and it's just inspirational seeing her posts on Instagram. And then I actually have my own blog, which is fun. I haven't posted on it in a while, I should be doing that. But it's called peytonpecia.com and it's full of just stuff about my life, inspirational stuff, and just getting to know me as a person and being like, hey, you can be cool and still have alopecia.

For people that are just getting diagnosed and just realizing that they have alopecia, it's not the end of the world. Alopecia isn't all of you, and it's also not none of you. I don't think the right way to go is to make it your whole personality or just suppress it entirely. Suppression doesn't work, it really doesn't. And so my advice to y'all is just make it a part of your personality. You can joke about it, inject humor into it. And don't be afraid to ask people for help, like, what do I do? My hair is falling out, how do I get all of it out of the shower? I think humor and not suppressing are the two best ways to go mentally with it. Just make it a joke! You can make anything funny.

Transcript lightly edited for clarity.