Extraordinary Patients

Positivity, Perseverance Inspires Other Young Adults in Vasculitis Community

This summer’s International Vasculitis Symposium in Bloomington, Minnesota, marked another successful gathering of young adults and continued the growth of our community. While it was great to see old friends again, I was reminded of how this disease continues to impact new people every year, and how scary and daunting it can feel as a patient in those first few months after diagnosis.

That’s why I wanted to share the story of Jenna Curl in this edition’s young adult patient profile. Jenna is one of the newest members of our community after being diagnosed with Takayasu’s arteritis this April, but her positive attitude and determination to fight back against the disease has been incredibly inspiring.

There’s certainly no good time to be diagnosed with vasculitis, but you could make a pretty compelling case that your senior year in high school is the absolute worst time for it. This is what happened to Jenna, an 18-year-old from the Tampa, Florida, area who developed high blood pressure and shortness of breath for two years leading up to her diagnosis. She was a standout cheerleader at her high school—a four-year member of the varsity squad, in fact—but said her diagnosis took a toll on her, both physically and emotionally.

She couldn’t go back to school after being diagnosed and starting treatment, and even had to give up her top college choices because her doctors wanted her to stay close to home for school. It meant big universities like Alabama or Florida State that Jenna had dreamed of were now out of the question. But Jenna refused to give in to her disease, and instead developed an outlook that many teenagers— or even adults—might struggle to embrace.

Shortly after her diagnosis, Jenna enrolled at Florida Gulf Coast University, located about two hours from home. “I was upset at first, but at the same time I knew it was the best decision for me,” she said.

Not only did she find a school that fit with her doctor’s requests, but also realized she had a growing passion for medicine and the desire to help others. “Being diagnosed has made me want to help other people,” Jenna said. “Getting a different outlook as a patient really changed things for me.”

While most people would focus on themselves and their own struggles, Jenna went the other way, instead working to educate herself so that she can have an impact on patients in the future. It all comes back to her mentality, which she plans to carry into her college journey.

“For me, I just get up and don’t let it beat me down,” she explained. “I know I’m going to have that same mindset in college and be an advocate for myself.” Fortunately, Jenna’s health status is showing improvement as she gets ready for her freshman year. Tests this summer showed her overall inflammation has gone down, and she is excited to be on her own and experience college life.

For all of us who know what it’s like to deal with the pain of our disease and the subsequent treatment it requires, it’s impossible not to admire Jenna and the path she has taken over the past few months.

Jenna’s end-goal is not just to overcome her disease, but to become a nurse practitioner and have the same sort of impact as her mom, who also works in the medical field. This type of thinking and perseverance is what gives people hope, and it’s why we’re proud to include Jenna in our family of young adults fighting against this disease as one collective group.

Author: Ben Wilson is a sports broadcaster and works with the VF’s young adult patient community.
This article originally appeared in the September/October 2019 VF newsletter.