For most people, food is woven into nearly every part of life — family dinners, birthdays, football parties, and late-night snacks. But for 26-year-old Shelby Edge of North Carolina, eating is a daily source of fear, pain, and exhaustion.
Shelby lives with eosinophilic esophagitis, or EoE, a chronic immune condition that causes her throat to swell and tighten whenever she eats certain foods. It’s a disease that turns a basic human need into a constant physical and emotional struggle.
Her symptoms first appeared in middle school. “I was sitting at lunch eating spaghetti when it suddenly felt like something was stuck in my throat,” she said. “I thought I was choking.” The feeling lingered for weeks, terrifying her so much that she stopped eating altogether. Doctors didn’t know what was wrong, and at one point, school officials suspected an eating disorder. Then, as suddenly as it came, the problem disappeared.
Years later, after returning from a cruise in her early twenties, the feeling came back — only worse. “It felt like something was stuck in my throat 24/7,” Shelby said. “It didn’t stop for eight months.” She couldn’t eat solid food and quickly lost weight. “Everyone noticed,” she said. “I looked really sick.”
Doctors in Chapel Hill eventually found the answer. A specialist performed an endoscopy and discovered her esophagus had narrowed to nine millimeters — about the width of a pinky finger. The diagnosis: eosinophilic esophagitis, an inflammatory condition where white blood cells build up in the esophagus, reacting as if to an allergen.
“It’s like your body attacks itself,” Shelby explained. “Bread, potatoes, meat — all the normal things people eat — feel like they get stuck.”
For a while, Shelby could barely eat anything. She joined clinical studies, including one testing an experimental injection later approved by the FDA. Even so, her fear of food deepened. “People don’t understand what it’s like,” she said. “Imagine being terrified three times a day, every day. The world revolves around food. When you take that away from someone, it’s devastating.”
Her treatment now includes regular endoscopies — a procedure that stretches her throat using a balloon — and weekly doses of Dupixent, an injectable medication that’s brought her the most relief she’s ever had. “It’s changed my life,” Shelby said. “When I combine it with the endoscopies, it’s life-changing.”
Still, anxiety lingers. Shelby eats mostly soft foods and refuses to eat without soda, which she says helps “push food down.” Dairy and bread are still triggers. She often avoids eating in public. “It’s embarrassing,” she said. “People don’t know what’s happening when I start to struggle.”
But what once felt isolating now fuels her mission. Shelby has begun sharing her story online to raise awareness about EoE and encourage others to seek help. “If someone sees my videos and realizes, ‘Maybe that’s what I have,’ then it’s worth it,” she said. “If I can help even one person or one parent understand what’s happening, I can sleep at night.”
She’s found strength in the community forming around her story. “It’s not fun, and I wouldn’t wish it on anyone,” Shelby said. “But I can live with it. And if I can help someone else live with it too, that makes it easier.”
