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Leah Hayes reflects on world swimming champs success, journey with alopecia

Mary Omatiga catches up with USA Swimming stars on the red carpet at the 2022 Golden Goggle Awards in New York City.

High school junior Leah Hayes exudes the confidence, maturity and wisdom of someone far beyond her 17 years. Hayes is USA Swimming’s Breakout Performer of the Year, thanks in part to her 200m individual medley at June’s world championships. She was also diagnosed with alopecia universalis -- an autoimmune disease that causes complete hair loss -- at age 7. Hayes spoke with NBC Sports about her journey with alopecia, her growth in the sport and how she’s learned to confidently embrace her true self.

*This interview has been edited for length and clarity.

OlympicTalk: How did you get your start in swimming? Do you have a memory of when you first fell in love with the sport?

Leah Hayes: I started swimming when I was 7. My friend started doing it and invited me to take lessons with them. My current swim coach saw me when I was 8 and recruited me to the team. I always loved the feeling of being in the water.

Did you grow up watching the Olympics? Are there any swimmers or other Olympic athletes that you looked up to?

Hayes: I did not. But I watched my first Olympics in 2016, and that’s when I started dreaming of becoming an Olympian. I watched Katie Ledecky swim the 800m, and she just crushed it, and I remember thinking, “Wow, I want to do something like that.” Now that I’m teammates with her, it’s a dream come true.

Take me back to U.S. team trials for the Tokyo Olympics (finishing 10th and 11th in the IMs at age 15). What was that experience like for you, and what did you learn about yourself?

Hayes: I learned some different things about what I need to do race-wise, but also learned that as long as I believe in myself anything is possible.

Did you watch any of the Tokyo Olympics?

Hayes: Yes, I did! I didn’t know many of the American swimmers at the time -- now I know them better -- but I was rooting for them from home, and it was so exciting to see them swim out there.

Walk me through your experience at the 2022 World Championships.

Hayes: It was incredible. I was able to go to that pool in Budapest a year earlier for a junior team trip, so I was familiar with it, which was nice. But it was incredible to be around the world’s best swimmers. To even compete against some of them, I was starstruck.

Who in particular were you starstruck by?

Hayes: Pretty much everybody, honestly. To race against Katinka Hosszu, who is one of the world’s best in the 200m IM, was amazing.

You were dealing with a stress fracture in the lead-up to worlds. Take me back to the day you found out about it.

Hayes: I had severe pain in my foot for about two weeks before I went to the doctor. I thought it was from a strain. A week before the U.S. International Team Trials, I was sitting in the doctor’s office, and when she told me it was a stress fracture I immediately had tears in my eyes. I remember thinking, “Is my season over? Will I not even get to compete at the meet I’ve been training for this entire season?” But then [the doctor] told me I could continue swimming, and I remember feeling a huge wave of relief come over me. I continued with my training but went a little bit lighter with weights and conditioning because I didn’t want to do anything outside of the pool. I just kept pushing forward and didn’t let it affect my race.

How special is that 200m IM bronze medal, knowing all that you had to overcome to get there?

Hayes: There are not enough words to describe it, but I’m just so grateful. At U.S. Olympic Trials, I swam a 2:12.89 and didn’t even make it to the finals, and a year later, I make it to the international team trials and then actually win a medal at world championships (in 2:08.91). I’m still in disbelief. I was disappointed in my performance at (Olympic) Trials, but I knew that if I trusted God and just continued to work hard that my time would come. Little did I know that it would come a year later.

I want to talk about your alopecia. There’s obviously so much more to who you are, but it is a significant part of your story. Can you tell me about your journey with this autoimmune disease?

Hayes: I was diagnosed at a pretty young age, so I’ve learned to deal with it. It is a part of me, and I live confidently with it. When I swim, I don’t wear a cap because I want to bring more awareness to alopecia, but I also hope to inspire other girls who may have the disease or other people with physical differences that anything is possible. Your differences don’t limit you.

I know you were pretty young, but can you take me back to the day you got your diagnosis?

Hayes: I remember sitting in the doctor’s office and hearing the words “alopecia universalis.” I was 7 years old and really had no idea what it was. I didn’t fully understand what happened to me or the impact of the disease on my life at the time, but looking back, it’s brought me so many different opportunities and has led me to so many new people. I’m actually really grateful for alopecia.

As a fourth-grader you decided to tell the entire grade about your alopecia during a school assembly. What led to that decision, and why did you decide to make that announcement so publicly?

Hayes: I was always an active kid, swinging on the monkey bars and running around outside at recess, and my wig had actually fallen off a few times, and people had gotten glimpses of it. There were rumors spreading, and I just decided I wanted to take hold of the matter and let everyone know the truth.

I was so happy with the way my parents and school helped me with that. My classmates were all so supportive when I made the announcement, and I couldn’t have asked for a better reaction.

You’ve noted the anniversary of your decision to be “wig-free” on social media. Why is that important to you, both in and out of the pool?

Hayes: My decision to go wig-free has led me to be a true version of myself and really embrace who I am and also let people see the true me. Being wig-free is definitely a big decision that can only be made on your own timeline, but I think it’s been one of the best decisions I’ve ever made.

What has alopecia taught you about yourself?

Hayes: It has taught me to be kind to everyone and to be more understanding. Many people don’t show the things that they’re going through. There’s a lot going on the inside that you don’t see, so it’s just a matter of being caring and cautious toward others.

What advice would you give to anyone struggling with alopecia?

Hayes: I’m always available to contact. There’s also a group called the National Alopecia Areata Foundation that has conferences and lets people know where to find them locally. That’s a good way to meet up with people that have alopecia and find those support groups. I attended a few support meetings growing up, and that really helped me.

I would also tell people to embrace who they are and know that alopecia is nothing to be ashamed of. It can lead to new opportunities and connect you with many people.

Is there something you wish more people knew about alopecia?

Hayes: I wish people wouldn’t associate the disease with cancer and chemotherapy and in general had a better understanding of what it is.

I have some rapid-fire questions for you. Are you ready for this?

Hayes: Yes!

Finish this sentence: I’m not ready for a meet without …

Hayes: Cheerios. I bring Cheerios to every single meet.

Plain? Honey Nut?

Hayes: Honey Nut Cheerios. It’s my go-to snack at meets.

Race day hype song?

Hayes: Oh. I have a playlist, but I’d probably go with “Believer” by Imagine Dragons.

You have to sing karaoke for your life. What song are you picking?

Hayes: “Bohemian Rhapsody” by Queen.

Post-workout meal?

Hayes: Chipotle. It’s my go-to. I have one right next to my pool, and I keep asking my relatives for gift cards there for my birthday because I go there almost two times a week.

Are you a burrito bowl kind of girl or burritos?

Hayes: I’m gluten-free, so I had to switch from burritos to bowls. I start with white rice. I love the lime flavor. Then chicken, fajita veggies, pico de gallo, corn salsa, black beans and then sour cream.

No guac?

Hayes: I pay for my own food, so no.

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