Woman with rare medical disorder challenges stereotypes, inspires thousands to get and stay fit

Woman with rare medical disorder challenges stereotypes, inspires thousands to get and stay fit

Hannah Setzer grew up in a small town in Virginia. She was born with a rare disorder that doctors believed would not allow her to ever walk or talk, and survived at least 60 reconstructive surgeries to become a passionate fitness instructor influencing and inspiring over 65,000 followers on Instagram, according to Health

“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 told Health.  

She refused to let her medical condition prevent her from her passion of staying active, competing in sports from running to ultimate Frisbee while she was a child, per Health. 

Hannah refused to let her medical condition prevent her from her passion of staying active. Courtesy of Hannah Setzer

Hannah refused to let her medical condition prevent her from her passion of staying active. Courtesy of Hannah Setzer

A cystic hygroma, otherwise known as cystic lymphangioma, appears as a rare type of cyst in the head or neck region due to blockage of the lymphatic system, which is like the sewage system of the human body that filters out excess fluid and germs, according to the National Institutes of Health (NIH).  

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The NIH noted the condition can lead to facial deformities, airway obstruction, cause skin infections and require surgery to treat it, but can grow back

“Out in public [people] will stare at me, point, or talk about me—I don’t care about that,” she says.  

Hannah Setzer was born with a rare disorder survived at least 60 reconstructive surgeries to now become a passionate fitness instructor. Courtesy of Hannah Setzer.

Hannah Setzer was born with a rare disorder survived at least 60 reconstructive surgeries to now become a passionate fitness instructor. Courtesy of Hannah Setzer.

Hannah continues her quest to stay active and healthly. Courtesy of Hannah Setzer

Hannah continues her quest to stay active and healthly. Courtesy of Hannah Setzer

In 2018, she resolved to fulfill a New Year’s resolution by exercising for 30 days, but then it spilled into 50 days, and fast-forward four years later, she continues her quest to stay active and healthy.

“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.” 

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Her friends were so impressed by her fitness focus that they inspired her to start her own Instagram exercise platform @feedingtube.fitness, where she shares workouts to motivate others to say active, hoping increase the presence of people with disabilities who are exercising on Instagram, per Health. 

“On Instagram I didn’t see a lot of people with disabilities who were exercising and moving. I felt maybe I should do that,” says Setzer

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“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.”