Chronic Illness

Singing At The Top Of Her Lungs

Julia Rae may have cystic fibrosis, but that hasn't stopped her from being a rising star in the worlds of singing, acting, and pageantry. Oh, while running the occasional marathon besides.

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At 17, singer and actress Julia Rae flew to Los Angeles to pursue her dream of becoming a professional singer. A month after she arrived, her lung partially collapsed, again.

Julia Rae taking a selfie.

Rae, now 25, was born with cystic fibrosis (CF), a chronic lung disease. She was used to extreme fatigue, sinus problems, and a nasty cough. For years growing up in Philadelphia, she dedicated herself to extra hours of special breathing treatments to clear her lungs so she could take singing lessons and perform in local theater productions. And it paid off. At 16, a music video she made and put on social media went viral, catching the eye of producers in L.A. Her condition wouldn’t get in her way, she thought.

“I was singing before I could talk,” says Rae, whose older brother, Will, also has CF. It’s a genetic disease that causes the body to make a thick mucus that clogs the lungs. When Rae was born, doctors told her parents she likely would not live to see college.

When Rae was 3, she pointed to Barney singing and dancing on T.V. and asked her parents, how do I get in there? “Music has been my escape, my therapy, my mood lifter my whole life,” Rae says. “It’s how I get through my day.”

Music has been my escape, my therapy, my mood lifter my whole life. It’s how I get through my day.

But then, in L.A., she was rushed to the emergency room. “I was in excruciating pain,” she says. “I could point to where I thought my lung wasn’t working.” She spent weeks in the hospital with her mother at her side. She wrote a letter about her life, and asked her parents to include it in the program at her funeral.

In the hospital, she remembers asking her mother, is this a cruel joke? “I thought, maybe this is the moment when CF is really going to change my life,” Rae says, “maybe this is my time.”

Over the weeks, Rae improved enough to leave the hospital, and she returned home to Philadelphia to recuperate. The year before, she had been named Miss Pennsylvania’s Outstanding Teen, and as part of the pageant’s community service component, she formed a non-profit. She named it Singing at the Top of My Lungs. At home in Philly, Rae threw herself into building up her organization, which raises money to find a cure for CF and to support art and therapy programs at children’s’ hospitals.

“I immersed myself in the CF community,” says Rae, who now splits her time between Philadelphia and New York. “I certainly had those moments when I wanted to give up, but it’s how I coped. It’s what propelled me forward.” That year she hosted a fundraiser with her band at the time, raising more than $12,000 for CF research and programming. Since then, she’s helped raise more than $100,000.

Julia Rae in an appearance as Miss Philadelphia 2015.

It’s a far cry from how Rae handled her illness for most of her life. As a child and teenager, she didn’t want to talk about CF. She didn’t want her friends to know that, until a special treatment vest was invented when she was 7, her mother pounded on her chest several times a day to help open her lungs, or that she was hospitalized at age 6 for a partial lung collapse. During productions, she didn’t want to ask music directors for special treatment. She didn’t want to be a problem, for people to feel sorry for her.

But then at 16, she won the Miss Pennsylvania Outstanding Teen pageant, and she needed a cause for her year of service. Brainstorming with pen and paper, she scribbled across the top of the page, “I need to sing at the top of my lungs for CF.”

“And that became my platform,” Rae says. “I realized I was doing a disservice to that part of me by not acknowledging it.” Talking about her condition has helped her heal. Helping others has given her strength.

Talking about her condition has helped her heal. Helping others has given her strength.

A year after her partial lung collapse at 17, Rae returned to LA and recorded an original song, “Be That Girl” that was featured in the movie The Greening of Whitney Brown, starring Brooke Shields. She also appeared on Radio Disney and has sang for the ABC Thanksgiving Day Parade. She graduated with a degree in media and communications from Fordham University, won the title of Miss Philadelphia, and was then first runner-up to Miss Pennsylvania. She also ran the New York City marathon.

Most recently, Rae’s finished her first EP of original songs, which was released on Valentine’s Day. She co-wrote the music and the lyrics. She’ll also appear in a national commercial in 2018, plans to speak on the Hill on behalf of those with rare diseases as part of Rare Disease Week, and says she’ll also “breathe new life into my non-profit, no pun intended.”

Rae crossing the finishing line at a recent marathon.

She still slips on her airway clearance vest for up to two hours every day to shake the mucus from her lungs. Some days, her cough makes it hard to sing. But she’s also found relief in a new medication that treats CF on a molecular level.

After two months on the medication, “I’m not in pain anymore. I’ve never felt better,” she says. Yet, it’s still a daily struggle living with her condition. “With CF, you can’t take days off, and it gets to you,” Rae says. “But this is who I am, this is my reality.”

As a performer in the public eye, it’s taken time for Rae to feel comfortable sharing her story. She never wanted CF to define her. She wanted her talent to speak for itself. But, admitting to the world CF is a part of her has energized her, it’s fueled her art.

Continuing to talk about CF also helps lift her spirits on difficult days, she says, especially when she’s encouraging children and teens to not let CF stop them from pursuing their dreams. “Sharing my story never gets easier,” she says, “but every time I do it, I’m amazed at the response.”

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