'Ignore the haters': Marlboro woman with alopecia lost hair but found a community

Stephanie Yuen was a seventh-grader losing her hair due to alopecia, an autoimmune skin disease that attacks hair follicles. She wore hats to Marlboro Middle School to cover her head.

The school’s chorus teacher, Julianne Jay, knew the feeling. Jay was 22 at the time, just embarking on her career, and had been covering up a softball-sized bald spot. She’d never met Stephanie, but she wanted to let her know: You’re not alone.

“I pulled her aside, lifted my hair that was covering my bald spot and said, ‘I have alopecia, too,’” Jay recalled. “She was crying, she was so excited. I want to cry right now, thinking about it.”

That encounter had a long-reaching impact.

“It inspired me to be confident and comfortable in my own skin,” Yuen said.

'Just be yourself': New Jersey cross-country star with alopecia finding herself on and off the course

It took a few years, but while at Marlboro High School, Yuen took off the hat. Then she started raising money for the National Alopecia Areata Foundation (NAAF). Then she became a mentor through NAAF, forming bonds with younger kids who are going through their own alopecia journeys. Then she published a book about living with alopecia, titled “Stronger Together.”

On Sunday, Yuen will graduate Rutgers University with a degree in nursing and a goal of working in pediatrics — a pursuit inspired by her real-life crash course in empathy.

“I am so proud of her,” Jay said. “She’s going to change the world.”

That's already underway. One of the kids Yuen mentors, 12-year-old Stephanie Milewski of Bucks County, Pennsylvania, inspired a bill currently winding its way through Congress that would mandate insurance coverage for wigs for those suffering from medical hair loss.

When she first met Yuen, two years ago, Milewski was reticent about her own alopecia. Now she’s making Powerpoint presentations to senators.

“She’s a really great influence to me,” Milewski said, “and probably a lot of other people.”

Sometimes no words are needed. Two weeks ago, while working a student-nursing shift in the pediatric unit of Saint Peter’s University Hospital, Yuen encountered a 6-year-old oncology patient “who comes in for her chemotherapy treatments and she said to her mom, ‘Oh my God, she has the same head as me!’ And she gave me a hug,” she said. “Making her smile just made my day.”

'I felt like myself again': Losing your hair to alopecia changes you

'There is no stopping you'

Formally known as alopecia areata, the condition affects approximately 2% of the population worldwide, according to NAAF. Currently, about 700,000 Americans have some form of it; 40% experience symptoms by age 20.

Yuen was diagnosed at 13. She remembers “running my hand through my hair while doing homework and noticing bald spots.” By eighth grade, she was bald. Her parents bought wigs for her, but they were itchy and uncomfortable.

Jay and her own mother went to Yuen’s home to speak with her parents about it over dinner.

“It’s genetic, so some parents blame themselves for passing this along to their children,” Jay said. “We told them: She will come to terms with this and you will come to terms with this.”

At Marlboro High School, Yuen played basketball and flute in the marching band. There were bullying incidents, unfortunately. When she was a freshman, an upperclassman flipped her hat off in the hallway. Eventually she ditched the hats, scarves and wigs. She founded an alopecia club that raised $1,000 for NAAF.

Then came the mentoring.

Over the past few years, through NAAF, Yuen took five youths with alopecia under her wing. They text, talk over Facetime, and sometimes meet up.

“When I got to talk with Stephanie, she is so funny and empathetic and supportive,” Stephanie Milewski said. “When I told her stories of when some kids in my class were making fun of me and making me feel really upset, she was like, ‘Don’t listen to them. Just be yourself and that’s all that matters.’ That made me feel a lot better.”

Though only 12, Milewski is now becoming a mentor herself, paying it forward.

“I’m so happy she learned to use your voice,” mom Joan Milewski said. “Mentors like Stephanie teach the kids, ‘You’re perfect the way you are. Look, I am living proof.’ It shows her: There is no stopping you.”

Disability fashion: West Long Branch business makes leg braces look stylish

Chipping away at a stigma

In 2021 Yuen published “Stronger Together,” a 137-page book about living with alopecia that went beyond her personal story. She interviewed actor Anthony Carrigan, model Kylie Bamberger and American Ninja Warrior contestant Kevin Bull about their experiences with the condition.

“Everyone is beautiful,” she wrote. “From the hardships and trials we encounter along our journeys, we can always come out stronger. Regardless of whether you have alopecia or not, ignore the haters and the negative energy, and always be true to yourself. Be you.”

She credits Jay (under her maiden name, Julianne Chandler) — “without her, I could have gone down a completely different path,” Yuen said. There’s an interesting postscript to that.

“Stephanie has said ‘You gave me so much strength,’ but I was only 22 at the time and I only found strength to be so open about my alopecia because of her,” Jay said. “I felt like I had to step up to the plate and say it was no big deal. So she really helped me a lot, even though she probably doesn’t think of it that way.”

Jay is 33 now, and “I ended up completely going bald in December,” she said. “I was texting (Yuen for advice) on, ‘Do you moisturize your head? What do we do?’ So she turned around and became my mentor.”

Stigmas don’t disappear overnight. They fade slowly, with every kind word and deed chipping away. Each summer Yuen speaks at a camp run by Children’s Alopecia Project, a Pennsylvania-based nonprofit.

“At the end of my speech one of the teens raised their hand and said, ‘It’s not a question, but reading your book has made such a positive impact on me,’” Yuen said. “I teared up. Comments like that make what I’ve done worthwhile — and that makes me happy.”

Stephanie Yuen’s book “Stronger Together” is available in paperback or ebook form at Amazon.com.

For more information about the National Alopecia Areata Foundation, visit www.naaf.org.

Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.

This article originally appeared on Asbury Park Press: Alopecia experience pushes Marlboro woman toward nurse career