My name is Sophie, and I'm here today to talk about my experience with eosinophilic esophagitis or EoE.

I'm a senior in college studying biochemistry, and I'm on the swim and dive team.

I also really enjoy doing crocheting and reading and hanging out with my friends.

At home I live with my mom, my dad, my sister Elise, and my dog Okie. Their support has meant the world to me and really helped me through a lot in my life.

In sharing my EoE journey, I hope to help raise awareness about the disease and help give hope to patients that they could find treatment that works for them in the future.

I've been experiencing symptoms of EoE since I was a little girl. And they were mostly, I guess, diagnosed as food allergies for the most part. So that was a little frustrating, not really knowing what was going on for so long.

. . . There was a variety of foods that I couldn't eat, including tree nuts, chickpeas, seafood, sesame, lots of different fruits.

So, I started off with a lot of food restrictions from the start. And as I started getting a little bit older, around 11 or 12, I started experiencing some more symptoms.

I noticed certain foods took a long time to chew and swallow . . . That's when I started experiencing trouble swallowing. And it was for foods like meat and bread especially. It would get stuck in my throat and it would just feel like a lump that wasn't moving. It felt like I couldn't breathe.

Nothing would help, including water. That would only make it worse.

I mean, it would happen in all sorts of different types of settings.

At home, eating with my family, out to eat with friends, or even in the cafeteria at school.

My symptoms really impacted meals and how I was interacting with others. I would normally take a longer time to eat than everyone else. And sometimes I would have to bring my own food that was different from everyone else, which didn't feel good at a younger age.

By the time I was 13 or 14, my mom had heard about EoE and its symptoms through her work.

And she started to piece together that it could be EoE because my symptoms were exactly what she had heard about. So she really pushed for me to see a GI doctor to get my diagnosis . . .

. . . When we finally got to go see a gastroenterologist, they did an endoscopy for me, to see if I had EoE or not. And I was diagnosed with EoE.

After I initially got my diagnosis, there were no FDA approved treatments for me to take. So, they just suggested that I continue doing dietary restrictions, which really widened the amount of food I couldn’t eat even more. And it wasn't really helping relieve my symptoms, such as having trouble swallowing or the acid reflux or my stomach cramping.

When I was out to eat with friends, it was really hard to find something on the menu that I could have at times. There was a birthday party that I was invited to. And I got the list of food that was going to be there before I arrived and realized I couldn't eat almost any of it.

And so that was a little sad to bring my own food to the birthday party. I would normally have to bring my own lunch to school every single day too just to make sure that there would be guaranteed something that I could eat as well.

My symptoms started to extend to other parts of my life outside of mealtime. I'm a competitive swimmer, and swimming is a big part of my life. And something that I really value. I would have practices that were up to 2 to 3 hours every single day.

And if I wasn't getting enough food, it would be really hard to continue through a whole practice without feeling sick.

...and I would have instances of really bad stomach cramping during practice.

So, soon after I was diagnosed I was entered into the EOHILIA clinical trial.

What was a little scary at the start was that I didn't know if I would be receiving treatment or not. So, I went in pretty blind.

I had to keep a diary of how frequently my symptoms were happening, and I really started to notice, like, wow. Like, I don't have as many occurrences of trouble swallowing my food. And I'm feeling much better especially at swim practice. I didn't have as many instances of stomach cramping.

Participating in the clinical trial really gave me hope for my future, especially as someone who is going to be heading off to college soon, really gave me a sense of independence.

After the trial ended . . . there was an FDA approved treatment available for me, which was an injection. Doing an injection wasn't the right fit for me though.

I did have some challenges with my symptoms especially the trouble swallowing. And so that was really hard kind of going back to that place of sitting in the lunchroom, not being able to get my food down. Same thing at home, so that was really sad.

I heard that EOHILIA had been approved by the FDA through my mom…

And I was really excited to hear that that would be an option for me again after not having a treatment that was the right fit for me for so long.

I was interested in EOHILIA mostly because it was so convenient to use.

My doctor explained that EOHILIA is a 12-week oral treatment for EoE for people 11 years and older. He said EOHILIA is a liquid-like form of the steroid budesonide, specifically formulated for the esophagus, and that it comes in a pre-mixed packet.

My doctor also discussed the risks with me, such as high levels of corticosteroid medicine in the blood, and educated me about more common side effects, including respiratory tract infections. And he emphasized letting him know about any side effect that bothered me or did not go away.

After I started treatment I occasionally saw my gastroenterologist for check-ins.

Being able to take EOHILIA packets on the go was really convenient for me. I have a very busy schedule, so it was great to be able to just toss one in my bag before leaving. And it also made traveling much easier too, way less hassle.

During the first few weeks while I started taking EOHILIA I noticed an improvement in my symptoms. I didn't have as much trouble swallowing my food, less pain and less acid reflux.

I think my journey with EoE has taught me resilience and patience. Looking back to how I was doing beforehand, I'm doing better now. And I feel much more prepared to be on my own in the world, especially after college life.

I think my 13-year-old self would be ecstatic to know how far I've come, that I'm living with much less symptoms, and that I feel independent and I can have more foods now.

If you were supporting someone with EoE, I would say the biggest thing is to be their biggest advocate and really push for them to find something that works for them, and to make sure that the way that they're feeling is heard.

If you're living with EoE, I would say to hold out hope. There's a treatment option that worked for me, so I'm certain that there's one that would work for you out there.