I have always travelled from hospital to hospital since when I was a young child, because of my vomiting and allergies.

While we knew that I had allergies, we had no idea why. This was a very frustrating time for my mother. Doctors always said she was overly worried, but she was sick of feeling dismissed.

My symptoms continued to worsen so my mother finally decided, “enough was enough.” She brought me to the Bambino Gesù Children's Hospital in Rome, which has a history of treating patients with similar symptoms. There, I received a gastroscopy, a procedure where doctors sedated me and used a camera to examine my upper gastrointestinal tract.

Finally, at 11 years old, I was diagnosed with a chronic inflammatory disease called eosinophilic esophagitis (EoE), which causes the esophagus to contract and narrow. EoE can show up differently for people of different ages; the symptoms can be triggered by foods, leading to nausea, acid reflux, vomiting and stomach pain.

This long-awaited answer was a step in the right direction as, when I started my treatments, the real journey became clear. I’m proud that I persevered, but it certainly wasn’t easy.

Fighting against EoE

Learning to manage my EoE took time and resilience. I tried so many different treatments: one of the many steps I went through was the elimination diet, so that I could understand which food I could eat and which I could not. This started to impact some social activities, like going out with my friends for pizza. There was nothing that I could eat.

The worst phase was when I started to use a feeding tube. It was visible so everyone started to stare at me. When the disease is in an acute phase, I find it hard to swallow dry or hard foods.

But with time, my health started to improve. As I understood my disease better, I realized that my true strength was in facing daily life with EoE.

I still struggled to accept my situation, but I could also see how my efforts were starting to pay off.

I’m glad that I kept pushing forward and overcame the toughest part of my disease.

Finding acceptance and inspiration in EoE

In many ways, EoE is an invisible disease. So, while I always feel its presence, people around me often struggle to understand how EoE impacts my life.

I’ve been lucky to have doctors who’ve helped me cope with my disease and explain what I’m going through. Thanks to them, over time, my perspective of EoE has changed.

I’ve come to accept that I have limits. But at the same time, I’ve learned strategies to help me, like drinking sodas with my meals to help them go down. I’ve learned to accept my disease and live with it instead of against it.

Although some people have not been kind to me because of my disease, I’ve turned these experiences into strength. You never know what kind of battles people are going through, so it doesn’t make sense to judge them. My experience with EoE is why I’m able to be so empathetic in my work to become a doctor, because I know what it means to be unwell and misunderstood.

This got me thinking—how I can help other people fighting chronic diseases like EoE have a better journey than I did?

Turning connection into community

In addition to EoE, I also live with two other inflammatory diseases—atopic dermatitis and allergic rhinitis—which are both known to be linked to the same underlying cause: type 2 inflammation.

Over time, I’ve learned about type 2 inflammation and how the overactive immune response can be a driver of my EoE, atopic dermatitis and allergic rhinitis.

For me, EoE is my primary disease and the one that impacts me the most. But learning about type 2 inflammation has helped me understand all of my diseases better. More importantly, it’s brought me a community.

My mother founded a group, ESEO ITALIA, which brings people with EoE together through common knowledge of type 2 inflammation.

In May 2022, ESEO ITALIA celebrated the first European Eosinophilic Esophagitis Day. For the first time, I ate with people with the same disease as me and saw the similarities in how we experience food.

The event reinforced my determination to reach my life goal: to help manage people's pain, just like my doctors and communities did for me. That’s why I’ve decided to study medicine—so patients can have another doctor who understands that patients and doctors go on a journey together.

As a doctor, I hope to ensure that, in the future, people living with EoE won’t need to overcome even half the battles I have.

The road may be long, but I know it will be worth it. I hope that others with EoE can see my journey and know the truth—that there is still so much we can accomplish.

Gian Marco, Italy


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