Finding the Words: One Family’s EoE Diagnosis

This story features a real patient and her mother sharing their personal experiences and is available to the public for disease awareness only. Individual experiences may vary. Information should not be used for diagnosing or treating a health condition or disease, and it is not intended as a substitute for consultation with a health care professional. Madeline and Sally are paid consultants for Takeda.

Madeline was about nine years old when she first told her mom, Sally, about “the bubble,” a persistent pain in her chest.^1,2 At the time, she didn’t have any other words to describe the feeling. Her throat often felt tight, and sometimes food would get stuck, causing her to choke or vomit.^1,2

Despite her nursing experience, Sally was confused and concerned by the episodes. “I knew we were missing something, I just didn’t know what.” They visited Madeline’s pediatrician, the first of many doctor appointments to come.

A cardiologist confirmed Madeline’s heart was normal. Another specialist ruled out asthma.^1,2,3 Her bloodwork kept coming back normal. Each possible explanation led to another dead end. Eventually, they began a months-long wait to see the only pediatric gastroenterologist in their hometown.

For Sally, this was the most emotionally difficult part of Madeline’s story. “I was frustrated that I didn’t have words to reassure her and couldn’t protect her,” she recalls.

After a year and a half of appointments and testing, Madeline finally received a diagnosis: eosinophilic esophagitis (EoE), a progressive, immune-mediated inflammatory disease of the esophagus.¹

“I finally had a name for what I was experiencing,” says Madeline, now an adult. “And that was worth its weight in gold.” With a diagnosis, she felt validated and ready to begin the journey of healing.

With support from their care team, Sally helped Madeline navigate a restrictive food elimination diet, and together they tracked potential triggers by journaling and cataloguing approaches they tried.^2,4,5 “Our lives were different, especially mealtimes,” Sally recalls.

“Food revolves around every part of our lives,” says Madeline. “Once I found out my trigger, I think it broke something inside me.” Her struggles and self-doubt only deepened in high school. She wanted to join her friends in trying new things, but found that her adaptive behaviors only exacerbated the underlying issue.^1,4

“What we’ve learned is that inflammation in the esophagus over a long period of time is not good,” Sally explains.^1,4 When it is not controlled, inflammation of EoE can worsen and potentially cause irreversible scarring and narrowing of the esophagus over time.

Sally emphasizes how using shared, accurate language to describe Madeline’s disease changed the trajectory of their journey. The more Madeline learned about EoE, the more confident she felt speaking up in health care settings, at school and social outings with her friends.

Madeline acknowledges that managing her disease has been—and continues to be—a process.¹ That’s one reason she wants to help others recognize some of the symptoms that can be associated with EoE and the importance of working with one’s health care team.

“It’s empowering for patients to have a clear, accurate diagnosis—medically, but also socially and emotionally,” says Vijay Yajnik, M.D., Ph.D., Global Medical GI and Inflammation (GI²) Therapeutic Area Head at Takeda. “The faster we recognize signs and symptoms, the sooner people living with EoE can receive an accurate, timely diagnosis and explore appropriate disease management options to help find relief.”

For Madeline, her experience with EoE ebbs and flows. What matters most now is that she finally has an answer. “I’ve spent so much of my life waiting. Waiting for the diagnosis. Waiting for a test. Waiting to eat,” she says. “I want others living with this disease to have more information earlier in their journey, so they can find their own path to healing as quickly as possible.”