Doctors Thought This Woman Would Never Walk or Talk Because of Her Rare Disease—Now She’s a Fitness Instructor
She's challenging stereotypes by changing the look of Instagram's fitness space.
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Growing up in a small town in Virginia, Hannah Setzer never felt different from anyone else. She and her family were part of a support group for parents of children with facial anomalies, and she was surrounded by other kids who relied on feeding tubes and tracheostomy tubes just as she did. Still, none of her support-group peers had been diagnosed with her exact condition—cystic hygroma, a rare lymphatic disorder that led doctors to believe she'd never be able to walk or talk.
"I was born with millions of cysts in my head, neck, and esophagus, meaning I can't swallow, so I use a feeding tube, and they were also in my airway, which is why I have a tracheostomy tube to breath," Setzer, 30, tells Health. Although she's endured at least 60 reconstructive surgeries since childhood, she never let her condition get in the way of her love of activity, competing in a variety of sports from running to ultimate frisbee when she was young.
But Setzer never felt fully dedicated to fitness until she took up a 30-day New Year's resolution challenge in 2018. The challenge focused on exercising for 30 days.
Setzer gave it a shot. Thirty days became 50 days, and now three years later, she hasn't stopped—nor does she want to. "I have done a little bit of everything—yoga, running, weightlifting, kickboxing, and even random workout videos on YouTube," she says. "It's been so fulfilling to feel strong and powerful and have muscles I never thought I would have."
Impressed by her fitness journey, Setzer's friends inspired her to start her platform @feedingtube.fitness. There she shares her many workouts, and she motivates others to get up and move in any way that feels good to them. Considering the lack of physically challenged individuals in Instagram's fitness space, Setzer knew it was the right move.
"On Instagram I didn't see a lot of people with disabilities who were exercising and moving. I felt maybe I should do that," Setzer says. "I had never seen someone with a feeding tube doing what I was doing online or in magazines, so I thought maybe I should be the first person to do these things—so no one else can say I haven't seen someone who looks like me."
Since launching in September 2018, Setzer's platform has grown to a devoted base of over 24,000 followers eager for her hyper-positive "Move with me!" videos. The videos show off a range of workouts that can be done with or without equipment. She's also ventured into creating videos that veer away from fitness topics, like "how to change a G-tube" for feeding tubes, as well as her life as a foster mom to four teenage boys—a life she isn't afraid to admit can be a challenge.
"[My husband and I] didn't want take any chances with me having a feeding tube and getting pregnant and not knowing what would happen with that, and we knew that we wanted to foster, so we jumped right in," Setzer says. "Here we are four boys later. But if you had asked us two years ago if we were going to have four kids, we would have said 'No way, that's crazy!"
When she's not working out or hanging with her kids, Setzer acts as a disability advocate for the state of Virginia, ensuring that those with disabilities have the access they deserve. After working in the field for over three years, Setzer feels extremely fulfilled. "[Most people] don't typically have to go into a gym, library, or doctor's office and have to worry about communicating with people and telling people what [they] need, but that's not always the case with people with disabilities." Setzer says. "They deserve to be in those spaces too and talk to who they need to talk to to get what they need to get."
Having a public platform as a disabled person can often provoke negativity, online and IRL. Yet Setzer has found a way to rise above. "Out in public [people] will stare at me, point, or talk about me—I don't care about that," she says. "It's tough because I think so many people are always looking for outside validation. Just accept it and be proud of who you are and the things that you are doing, and that definitely radiates."
Though Setzer has made a name for herself in fitness, she says that "intentional movement" is the real point of her videos. "When I started out I was focused on just exercising, then I shifted my mindset to being intentional about using my body," says Setzer. "I just want to always be moving and not have pressure on myself to have to work out and sweat. I just want to move."
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