I was in my early twenties, freshly out of college, when I experienced something that would quietly but profoundly alter the course of my life. I was sitting at my cubicle, working as a Marketing Assistant, when I choked on a sip of water. Not food—water. It seemed strange but harmless at the time. A fluke, maybe. But soon, the choking started happening more frequently. Sometimes it was food, sometimes liquid, and each time I felt the same wave of confusion and rising panic. Something was not right.
In those early days, I had no idea what eosinophilic esophagitis (EoE) even was. I bounced from one healthcare system to another, desperate for answers. Each provider had a theory—acid reflux, GERD, ulcers (they said my stomach looked like a battlefield). I was prescribed PPIs and told to monitor my diet, and to be honest, I was in my twenties and refused to do a full elimination diet. Nor did I have the income to have an endoscopy done every three or so months. The episodes didn’t stop. My esophagus felt like a mystery organ—failing me and evading every explanation.
It wasn’t until I underwent multiple endoscopies that I finally received a diagnosis: eosinophilic esophagitis. Relief washed over me at first. I had a name for the thing disrupting my life. I was prescribed a steroid inhaler (used off-label to coat the esophagus), which I was hopeful about—but it failed to make a meaningful difference.
Getting that diagnosis also brought something else: anxiety. More than just the fear of choking was the fear of food itself. Every meal became a potential minefield. I started to dread eating in public, afraid of making a scene if something got stuck. I’d chew excessively, avoid certain textures, and sometimes skip meals altogether. The anxiety around food slowly became as overwhelming as the disease. I thought, “This is my life forever?!”
Professionally, I work in clinical trial technology, and my experience gave me a unique perspective on how new treatments are developed. So, when the chance came to join a clinical trial for EoE, I didn’t hesitate. I wanted to be part of something bigger — advancing the science that might help me and others like me. I enrolled in my first clinical trial with optimism.
Unfortunately, despite having active EoE, I didn’t qualify. The trial required a certain eosinophil count in three biopsy locations, and one of mine didn’t meet the threshold. It was disheartening. I had hoped for progress, but I felt stalled—once again at the mercy of a disease that didn’t fit neatly into diagnostic boxes.
Determined not to give up, I enrolled in a second trial. This one showed more promise, and I was actively participating for several months. But clinical trials aren’t easy. There are what we call “patient burdens”—logistics, check-ins, tracking symptoms, and in my case, commuting into the city. At one point, due to a device malfunction and some technical logging issues, I missed a week of entries. That small lapse disqualified me from continuing. I understood the importance of adherence in trials, but the reality of juggling life, work, and health made it incredibly challenging. It was an emotionally draining setback.
I was 32 when I finally tried a biologic for EoE – dupilumab. And almost immediately, for the first time since my diagnosis, I went into remission. The choking stopped. I could eat again—carefully, but freely. For the first time in years, I felt like I could breathe, metaphorically and literally.
In 2022, I became pregnant with my first child. Dupilumab had been my lifeline, but there wasn’t enough data on its use during pregnancy. After discussing with my doctor, we decided I’d stop taking it. Interestingly, my EoE symptoms went away during pregnancy. My doctor had mentioned that this was common—pregnancy hormones can suppress symptoms—and in my case, it was true. I had a smooth pregnancy, symptom-free. But three months postpartum, everything changed. I had my first choking episode since stopping the biologic. It was a wake-up call. I restarted the medication under medical supervision. Again, I wanted to continue breastfeeding, but there was little research on the medication during lactation. I pushed it as long as I could without the medication, but my symptoms—especially food impaction—became impossible to ignore.
Fast forward to 2024, when I had my second baby. Once again, pregnancy offered a strange relief—no symptoms at all. But just like last time, three months postpartum, the EoE came roaring back. One particularly terrifying episode involved food and water getting stuck for over 30 minutes. I started making arrangements for child care just so I could go to the ER. I was choking multiple times a week. It wasn’t just disruptive—it was terrifying. At that point, I had no choice. I had to go back on the medication, even while breastfeeding. My well-being had to come first. Since the very first injection, I haven’t choked since.
My most recent endoscopy showed that my esophagus couldn’t be dilated to the full amount—it had narrowed from years of inflammation and scarring—but the inflammation is now under control. On dupilumab, I’m living a normal life again. I can sit down at dinner with my husband and kids and not fear the worst. I can be present for my son and daughter, rather than worried I might end up in the ER.
Still, it’s hard not to reflect on how long it took to get here. The road was exhausting—full of trial and error, emotional tolls, and moments of genuine fear. Choking doesn’t just affect your throat—it affects your confidence, your mental health, and your relationship with the world around you. I’ve missed meals, missed moments, and lived with the kind of hypervigilance that only chronic illness can teach you.
Even now, I don’t consider my journey over. The weekly injection I take is a constant reminder that I’m managing something, not defeating it. I still hope for better treatments, for real remission, and one day, a cure. I’m committed to staying involved in research and advocating for more data—especially for women who want to become or are already mothers. We need more research on EoE during pregnancy and breastfeeding. We deserve to make informed choices, backed by science.
EoE is often invisible to the outside world. You can look perfectly fine while suffering internally. That’s why I share my story—because someone out there might be having their first choking episode and wondering what’s wrong. Someone might be navigating postpartum life, unsure of what symptoms to expect. Someone might be weighing treatment options or joining a clinical trial.
To those people: you’re not alone. EoE is complicated, misunderstood, and underdiagnosed—but it’s manageable. With the right care, with persistence, and with continued research, there’s hope.
If you’re living with EoE, or suspect you might be, trust your body and keep advocating for yourself. It took me a decade to get from confusion to control. I hope your journey is shorter—but even if it’s not, know that there’s a path forward.
And to the researchers, clinicians, and trial coordinators out there: thank you. Your work matters. You’re changing lives—one patient, one injection, one study at a time.
Jessica recently spoke at APFED’s 2025 All-virtual Research Round Up to discuss her experiences with clinical trials for EoE. A clip of the interview is below:
Jessica Grady is a B2B marketing leader with a strong background in life sciences and SaaS. With expertise in marketing operations, customer marketing, and demand generation, she brings both strategic insight and empathy to her work. Her personal experience as a clinical trial participant fuels her passion for improving the patient experience in research. Jessica holds a master’s degree in marketing and lives outside Philadelphia with her husband, Matt, and their two children. She enjoys spending time with family and friends — especially around a good meal (when she’s not avoiding her EoE trigger foods).
