As said Nicole Audrey Spector
May 22, 2025, is the first World eoe day.
It was a completely normal day that for me – a working mother of two who made sure that everything in the house was smooth – meant that things were pretty hectic. I was working and my boys (Jeric, 7 and Chase, 5) had a play date at our house with a boy named Max.
While the boys had lunch, Max’s mother called to tell me that Jeric had stuck a piece of turkey sandwich in his throat. He had no trouble breathing or talking, so I didn’t panic, but I could hear that he was really uncomfortable.
I hurried and took Jeric to the er. There a doctor checked him, confirmed the blockade and gave Jeric an injection of anti -inflammatory medication to help with a headache caused by the blockade.
Jeric relaxed in the process and the stubborn piece of deli meat finally went down. What a relief!
But that was not the end of the unrest. In fact, it was just the beginning of what a whole new life would be for all of us.
The er -doctor asked if I had tested Jeric on eosinophilic esophagitis (EOE), a chronic immune system disease. Symptoms of EOE are problems with swallowing and food bolus obstruction (FBO), which is called when food gets stuck in your esophagus.
I had never heard of EOE, let alone that Jeric had tested for it – there had never been a reason. Jeric had atopic dermatitis, asthma and allergies that are related to EOe because they are all caused by type 2 inflammation. But we did not know that yet, and the turkey’s sandwich incident of that day was the first and only indication that something was wrong with his swallowing.
When untreated, eoe can be really serious. It can ensure that failure, malnutrition and weight loss. So I absolutely wanted to have Jeric tested and make an appointment as soon as possible.
The test that Jeric needed was an upper endoscopy with biopsies from different places along the esophagus and down in his stomach. I was scared. Jeric should be placed under general anesthesia for the procedure. But what choice did we have? We needed answers. Fortunately, Jeric’s medical team was fantastic and I trusted that Jeric was in the best hands.
Looking at the images of Jeric’s endoscopy, both deeply fascinating and terribly disturbing. You could see how his esophagus had abnormal narrowing. It looked like railway tracks that went through swollen tissue. Completely inflamed. We had to bring down that inflammation.
The good news was that Jeric’s Eoe was limited to his esophagus. Some people have a completely in their stomachs, which is much more complicated.
The doctor was a crystal clear in her explanation about how to treat Jeric’s eoe, and I was so relieved to hear that Jeric’s eoe could almost certainly be treated with dietary changes.
Now you may think: “Dietary changes? Easy Peasy!” That’s what I thought first. Then I heard how extensive and intense these dietary changes should be.
Heather and Jeric, September 2024 (Photo/Caitue McBride)
To treat Jeric’s EOE and prevent future complications, he would have to remove the top eight allergens from his diet. That means all dairy products, soy, wheat, gluten, eggs, nuts, seafood and shellfish.
Jeric had peanut anaphylaxisSo he didn’t eat peanuts, but everything else? Until then, Jeric had been a classic American child in terms of how he ate. He lived practically from fish sticks, scrambled eggs, fries, pizza, ironing, ice – that should all go.
All of these foods from the table (literally) for Jeric while we ate our usual meals, not only felt impractical for our groceries and budget, but also cruel to Jeric. So my husband and I decided that Jeric would not be the only one in the house to stop eating all this delicious food. If he couldn’t eat that food, none of us would eat those foods.
Once at home I went through our fridge and pantry. Almost everything had to go. I remember looking at a can of black beans and thought, “Well, at least this can remain.”
Although this was only 10 years ago, and the internet already went on full steam, niche recipe makers and food bloggers who focused on restricting diets were much harder to find than now. I received a lot of help from the dietitian in the medical team of Jeric, but I also hired a woman to make recipes for me and give tutorials about the use of leftovers.
Those early travel to the supermarket were so difficult. I felt like an alien in the aisles, which passed dozens of items that used to go into the cart, but were now forbidden. The focus was on real meat, fresh fruit and fresh vegetables. At the checkout I was always surprised about how expensive it was.
Heather and Jeric on EOS Connection Conference, 2023
It was a tough transition and there were so often that I tried to become creative with fake cheese or another replacement and would end with a meal that was completely disgusting. We have passed countless dinners and desserts that were dirty and inedible. We all just had to pick up and laugh. A sense of humor about all this was crucial. It helped to keep things in perspective and helped us keep it emotionally together.
And I can’t ignore the good parts of our EOE experience. Our community really gathered around Jeric. Parents at his school were so accommodating and attentive. When Jeric was invited to a birthday party, they always made sure that he would have what he needed and not excluded. Moreover, we all ate so much better. I could feel and see the changes in myself. I had more energy, slept better and my hair, skin and nails were healthier.
Today Jeric 18 is and is getting ready to take a gap year so that he can travel. The inflammation that I saw in the images of endoscopy when he was first diagnosed with EOE was completely resolved. He still stays with his EO-friendly diet, but he doesn’t have to be as strict as he used to be and if he occasionally has a cheat day, there are no serious consequences.
Living with Eoe is not easy, especially not in the beginning, but when you put your mind and heart against it, you let it work and learn to appreciate what is the most important thing: having each other and being safe and happy. If you also get healthy – well, how great is that?
Sources
American partnership for Eosinophilic disorders – Patient brochure
American Partnership for Eosinophilic Disorders – Specialist Finder
American Partnership for Eosinophilic Disorders – Patient Education Toolkit
American Partnership for Eosinophilic Disorders – NavigateesCare.org
American partnership for Eosinophilic disorders – Patient Conference
American Partnership for Eosinophilic Disorders – Online Community
This educational source is made with support from Sanofi and Regeneron.
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