Imagine feeling pain when you swallow as you eat. Or imagine food getting stuck in your esophagus and you don’t know what to do. Picture, despite your best efforts, watching your child lose weight or refuse food. Imagine years of doctor visits and tests without answers. This is a common experience for people with eosinophilic esophagitis [EE-oh-sin-oh-FILL-ick uh-sof-uh-JIE-tis], also called “EoE.”

EoE is a chronic (long-term) allergic or immune condition that causes swelling in your esophagus. It can have a major physical, social, mental, and financial impact on people who have it and their families. The Asthma and Allergy Foundation of America (AAFA) and its food allergy division, Kids with Food Allergies (KFA), and the American Partnership for Eosinophilic Disorders (APFED) studied the impacts of living with EoE in a report titled, Life with EoE: The Patient Experience and Opportunities to Improve Care in the U.S.

As part of our research, we interviewed people with EoE and caregivers of children with EoE to understand the patient experience. Below, you’ll hear from Eva, Lisa, Lauren, Charlotte, and Rebecca* about how their experiences lined up with some of the key findings of our report.

The Diagnosis of EoE Can Take a Long Time

For many, receiving an EoE diagnosis can take years. Their symptoms can often be misunderstood or confused with other conditions. It can also be hard to find a specialist or get the needed testing to confirm a diagnosis. This delay can prevent them from getting the care, treatment, and symptom relief they need.

Rebecca was diagnosed with EoE 10 years after her symptoms began. She and her family didn’t realize her issues needed treatment.

“At the time, I didn’t even think about going to a doctor for it,” she said. “When I went to my parents about it, they were just like, ‘You need to eat smaller food and actually chew your food.’ I told them, ‘I am, but I’m still having problems swallowing things.’ But then I went off to college and it got worse. So, I basically lived off of mashed potatoes, really overcooked mac and cheese, and smoothies.”

Thankfully, Rebecca’s EoE is now well-managed after starting a biologic treatment.

Charlotte, an adult who had trouble swallowing for more than 20 years before her diagnosis, had her symptoms mistaken for a heart attack.

“I could breathe, I just couldn’t swallow,” said Charlotte. “They called the hospital and they sent an ambulance, and they were insistent that I was having a heart attack. I told them, ‘I don’t think so. I think it’s just a swallowing problem.’ But they said, ‘No, I think we really need to put you into the van and cart you off.’”

Why Is EoE Hard to Diagnose?

EoE can be tricky to diagnose for many reasons:

• Symptoms can vary from person to person and between age groups.
• People with EoE may have learned to manage their symptoms. They may cut food into smaller pieces, drink liquids when eating dry foods, put off meals, and avoid pills.

Eosinophils can be found in the esophagus for other diseases, such as:

• Gastroesophageal reflux disease (GERD)
• Other forms of esophagitis that damage the lining of the esophagus
• Infection
• Inflammatory bowel disease

Limited EoE Treatment Options

EoE is typically treated through a combination of diet changes and medicines. There aren’t many treatment options approved by the Food and Drug Administration (FDA) for EoE. For most people, solutions come through a lot of trial and error, which can be stressful. Treatments may not work as well as they would like them to or only work for a short time. Some treatments can also be unpleasant to take.

Lisa’s 13-year-old son who has EoE faced challenges finding a treatment that worked.

“We tried an elimination diet first, but [my son] still didn’t get better,” said Lisa. “His eczema became a big comorbidity for him. They put him on budesonide and he had an allergic reaction. We stopped using budesonide, but the EoE and the eczema continued. He is now on biologics which has helped immensely for him.”

Rebecca’s 12-year-old son also has EoE. While they manage his EoE with an elimination diet and budesonide slurry, it’s not always easy.

“It’s been really rough for [my son] when he was on the budesonide slurry,” Rebecca shared. “The couple of times he’s had to do it, he gets really angry.”

What Treatments Are Available for EoE?

• Elimination diet
• Elemental diet (liquid, formula-based diet)
• Proton pump inhibitor (PPI)
• Topical corticosteroids
• Biologic therapy
• Esophageal dilation

Read more about each treatment in our Life with EoE report.

EoE’s Impact on Social and Emotional Well-Being

EoE’s impact is more than just physical. It can have major social, mental, emotional, and financial impacts. When asked about the impact living with EoE can have on a family, Eva, caregiver of a son with EoE, had this to say:

“I think it can take a toll on the family of the patient. I think it can take a toll on mental health. And I think there’s a period of coming to terms with it and then grieving what it means, and then learning to live with it – the whole process of acceptance and all of that.”

Lisa spoke of its impact on regular activities many people take for granted. Traveling, eating out, attending events that include food, and more can be tricky with EoE.

“It adds a layer of complexity and stress to your life that some people never ever have,” she said. “I will be honest and say there are times I'm like, ‘I wonder what it's like to be so lucky to just be able to go grab dinner.’ That's not in our lexicon.”

Many people said they felt grief when they received their diagnosis due to changes they had to make to their diet, eating habits, and social life.

“It’s okay to mourn,” Lisa said. “You’re going to go through the mourning process because it’s going to be different. I just don’t think people are prepared for the emotional impact of this, especially at the beginning, which is quite massive.”

The Need for More Resources and Support

Our report found that people with EoE, caregivers, and health care providers feel there is a need for more EoE support and resources. Many people said it’s hard to find doctors who know how to diagnose and treat EoE. There is also a need for resources and educational material that address the wide range of experiences with EoE.

“I’ve run into so many [doctors] who don’t know what it even is or how to begin to treat it,” Rebecca said. “So, they go and they look up how people have been treated in the past, and it may not be the newest information … just having access to the educational material and being up to date on what the best practices are.”

Charlotte suggested that discharge papers have “resources and suggestions for food substitutions that were culturally sensitive and account for those who already have multiple diet restrictions because of health.”

How to Get Help Managing EoE

EoE can be a complex condition to manage. AAFA and KFA have created a guide called Your Guide to Managing Eosinophilic Esophagitis (EoE) to help you understand the basics of EoE and how to manage it. The guide is available in both English and Spanish.

Download, print, and share

Descargue, imprima y comparta

The Life with EoE report and Your Guide to Managing Eosinophilic Esophagitis (EoE) were developed independently by AAFA and made possible by support from Sanofi and Regeneron.

*Names have been changed for privacy.