Kevin’s story: Navigating life with eosinophilic esophagitis
There are an estimated 34.4 out of every 100,000 people in the world living with eosinophilic esophagitis (EoE), a chronic and progressive, immune-mediated inflammatory disease that damages the esophagus over time, impacting patients’ connection to the physical and social experience of eating. Adults with EoE complain of difficulty swallowing (dysphagia), food impaction, heartburn and chest pain. Children present more commonly with vomiting, heartburn and feeding refusal. Patients’ diagnostic journey can be long and frustrating, delaying treatment and increasing the potential risk for more severe complications such as esophageal narrowing (strictures) and food impaction.
As part of Bristol Myers Squibb’s team in Germany, Kevin’s focus is on helping to bring new medicines to patients. When Kevin was 12 years old, he started his own patient journey while having lunch at his grandfather’s house.
“All of a sudden it felt like something was stuck in my throat and I couldn't get it back up or down,” Kevin said.
Little did he know it, but Kevin had EoE, a disease that would profoundly affect his daily life. Beyond the debilitating physical symptoms Kevin began to experience, he was affected emotionally and mentally, isolating himself from the physical and social experience of eating.
“You are really afraid of what's going on and ask yourself ‘why can't I swallow [food] anymore?’” Kevin added.
From that point on, Kevin found himself approaching meals differently than his family and friends. Eating became an anxiety-inducing task where each bite had to be cut smaller, chewed longer and chased by a glass of water.
Like many people suffering from EoE, Kevin spent years visiting different doctors, awaiting answers. As time went on, Kevin’s symptoms progressed and greatly altered his lifestyle. The need for a diagnosis became a dire situation, and after 14 years living with symptoms, a doctor finally told Kevin he had EoE.
Watch the video below to hear Kevin discuss how his EoE diagnosis has impacted his life, the continued unmet needs that exist for people living with the disease, the advancing research efforts that give Kevin hope and the importance of raising awareness for the community.
Hi, my name is Kevin and I have EOE. It took my doctors 14 years to figure out what I have.
I was around 12 years old when it was the first time that something got stuck in my throat.
It was just the feeling of you swallow your food and you all of a sudden get this sudden like pain in your chest area. And there's like, this suffocating feeling that food doesn't go down.
But the bad thing is it won't get back up. So, at this point in time, I at least started to panic and I still do panic every time this happens. Because you need to stay calm but you can't. It always just takes your breath away in that very second.
You need to be very careful to drink in between so that nothing gets stuck. And of course, it depends on the food. If I ate like French fries, which are the worst thing to eat, they just get stuck constantly and I basically avoid French fries or everything that’s dry.
I was around 21 and I, I had this this like this pressure on my chest. And my doctor back then said, okay, you probably have a problem in your esophagus, but with acid reflux.
I think I've seen like ten doctors until this day, you just realize there's only a few of them that know what it is.
But nobody would really figure out what it was until like a couple of years ago where I had this endoscopy.
My wife can immediately tell that there’s something wrong with me.
My son saw this for the very first time and he just got scared all the way. He, he wouldn’t know what to do. He started crying, bawling his eyes out, and he came running to me and said, “I thought I was going to lose you because I didn’t know what was going on.”
When I had a really important business lunch, I wouldn't eat anything because it was just to set into my head that I could again cough up some food.
The most important part is to acknowledge what this condition is about.
And just spread the knowledge about it and say, “Hey, this happens and he coughs up air or he has to burp up air—not because he wants to or because he's rude. That's just the situation he is in.”
I think it's awesome that there's the opportunity that pharmaceutical companies do investigate these things and they do all of the research they do.
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