At age 18, after years of experiencing physical challenges relating to poor balance and what she described as “clumsiness,” Kelly Barendt was diagnosed with Friedreich’s ataxia (FA). A rare genetic disease that impacts walking and speech, FA afflicts one in 50,000 Americans, with symptoms usually appearing between the ages of 5 and 18.
In the wake of her diagnosis, the Ohio-based Barendt has become one of the most effective online advocates for individuals with FA. She’s active across multiple platforms, including TikTok and YouTube, and her blog, My Darling Life with FA, traces her evolution from newly diagnosed individual to influential online community leader.
On Wednesday, Barendt will add television to her media resume. Along with two other rare disease activists, William Yank and Travis Flores, she’ll appear on The Balancing Act, Lifetime TV’s morning show. The trio will be featured in “Rare at Heart: What Makes Us Tick,” a “Behind the Mystery” segment airing in advance of Sunday’s Rare Disease Day.
In partnership with the National Organization for Rare Disorders (NORD) and online health community hub Wego Health, “Behind the Mystery” has showcased more than 100 diseases. This segment will note how each of the three individuals have wielded the power of TikTok to drive awareness of their conditions, as well as help others feel less alone.
That second goal is why Barendt became an online advocate in the first place. After she was diagnosed, Barendt happened upon the web musings of a person with FA from Australia. “It inspired me to start sharing my story,” she recalled. “And that helped me process what I was going through.”
Barendt swiftly became one of the leading – and most empathetic – voices in the online FA community. “When I was first diagnosed at 18, I went through a grieving process. I went through denial,” she continued. “For years and years I couldn’t talk about it, but I realized that I could be that voice to others.”
To that point, the “Behind the Mystery” segment is designed to inspire as much as it is to inform. Barendt said she wasn’t sure what to expect heading into the taping. Slickly produced morning television, after all, is a different animal than social media. But the experience proved a linear one, even amid the ongoing pandemic.
“I didn’t have expectations, because I had never done anything like this before. The whole thing took under 15 minutes,” she said with a laugh.
As for what comes next, look for “Behind the Mystery” to continue in its efforts to circulate positivity and accurate, validated information. And look for Barendt to continue in her role as FA informer- and inspirer-in-chief.
“I want to keep connecting with people who want to learn more about the rare disease community,” she said. “With everything being virtual right now, there is a lot of opportunity for advocacy.”