Hi. My name is Hannah. I’m 30 years old. I’m here today to raise awareness for EoE. . .

. . . and let those patients know that they’re never alone, because it’s an invisible disease, so most people can’t see it. 

As a child I had anaphylaxis to nuts and eggs. I did have an itchy mouth with fruits and vegetables. My parents actually just thought I was a picky eater. They would bring me to the pediatrician. They had no idea what was wrong with me. But I was not diagnosed until I was about 17 years old.

. . . Since we didn’t really know what was going on yet, my doctor kind of just gave us EpiPens® for the anaphylaxis.

We would just stay away from obviously the nuts and eggs, the fruits and things that I kind of knew that bothered me. And my parents were catering towards me although they did think I was just a picky eater at the time.

. . . I was in high school at the time . . . I was on my winter break. My dad went to go pick up food. We're bonding around winter break around the Christmas tree. I'm eating my food like normal. And this waffle fry had actually got lodged in my throat.

To me, that was no big deal because food, I kind of always felt it go down my esophagus. That was nothing abnormal for me. I didn't know that it was not normal. So, I just grabbed my drink, took a sip thinking that it would slide down.

But you could actually feel that the waffle fry got more impacted. It only made it worse. I started to panic and drank more of my drink. And you could just feel the liquid stacking up. Waved over my dad, who did the Heimlich, and it was just like the movie scene where you saw the waffle fry go flying out onto the floor.

At the time, I felt the experience was very scary . . . I started eating in like really, really tiny bird bites which I already thought I was doing. So, I started taking even tinier bites because I was afraid to choke again.

So, I followed up with my pediatrician GI. She was asking me about how my winter break had gone . . . I explained that I had actually just choked on a . . . waffle fry for just giggles, telling her that I had bad luck. And she asked me if I had trouble swallowing and/or feeling like food go down your throat . . . I thought everybody felt food going down their throat and going all the way down. She said you're not supposed to feel food going down your throat and that's not normal. She said that I might have eosinophilic esophagitis.

And she said it so fast and I was only 17 and I was so confused on what this was. But she was so certain with such little information she ordered an endoscopy and it was done within one to two weeks, and it came back positive.

I felt relief, if anything, that I kind of felt, right in a sense, that there was something wrong with me. But at least I had a diagnosis and now I could actually treat it and tell people, “hey I'm not just a picky eater I have this disease and now I can actually do treatment.”

At the time of diagnosis there was very few options for me and none of them really fit my lifestyle.

Growing up it was pretty difficult to socialize especially eating out. Because that's what human culture is built around, is eating. So, with me being allergic to things, people, even after diagnosis, they still didn't really get it because it's invisible, you can't see it. People don't understand. They don't know what it is. At the time it was so rare there really wasn't that much information online, so people just, they just didn't get it. So, they would still kind of try to cater to me and pick restaurants that would fit my needs. Or I just wouldn't go. But it does give you like an anxiety feeling, trying to look at the menus ahead of time. Is there anything I can eat? Or, are these people catering to me? So, it was very difficult growing up with it.

I worked in a pharmacy for 10 years.

So, at the workplace we actually did have a cafeteria on site that had buffet style food, anything that you could eat. But with my allergies, I pretty much couldn't eat any of it. They did have bread. Bread is one of the foods I can eat. So, I would usually get a bread, maybe something else that I was able to get. It would literally be like two things on a cafeteria tray. I bring it back to the table in front of all of my coworkers. And some of them would laugh saying it was like a prison dish. And I would just laugh with them because I just knew they didn't understand. I would explain what EoE was but, again, most people just don't get it.

I took a visit to the allergist because I knew I was going to be leaving my job. I decided that I wanted to leave. I feel like I kind of went through this mini midlife crisis once I turned 30 and didn't want to work my life away. And I'm still young I want to travel now. So I decided that before I left I wanted to get my life together, make sure I had all those doctor visits in. Because, obviously, living with a chronic condition you just can't get up and leave without medication and all those doctor visits.

I was actually having trouble breathing at the time. It was like an asthma flare up. So, I took a visit to get some inhalers for my breathing to get better. Go to the allergist just for the intent for these inhalers. She found out that I had EoE and found out that I was going untreated with EoE. And she said I should not be walking around untreated with EoE. I told her that I was pretty much just here for the inhalers and I'm leaving my job soon I really can't do any follow up visits because I'll be traveling the world. She was like, “Oh no, no, no. We have this FDA approved medication, EOHILIA, and they come in packets and you can take them on travel.”

My allergist prescribed EOHILIA. She gave it to me and I looked at it. . . It was the budesonide already pre-mixed into a packet that didn't even need refrigeration. She said that you could just take these with you, throw them in your purse, your luggage, whatever, and that you won't go untreated with EoE.

My doctor explained that EOHILIA is a 12-week oral treatment for EoE for people 11 years and older. She said that EOHILIA is a liquid-like form of a steroid, budesonide, specifically formulated for the esophagus, and that it comes in premixed packets. My doctor also discussed the risk for me, such as high levels of corticosteroid medicine in the blood and educated me on more common side effects including respiratory tract infections. And she emphasized on letting her know about any side effects that bothered me or did not go away.

Because I was commercially insured, I used the EOHILIA copay card and got my costs down to nothing, although this may not be the case for all patients.

After I completed the 12-week therapy of EOHILIA, I had noticed an improvement in my swallowing.

This was my personal experience with EOHILIA. Everyone is different. That's why it's important for you to talk to your doctor and what's right for you.

I do have some advice for you if you get prescribed EOHILIA.

So personally, me working in a pharmacy for so many years and being an EoE patient, once I got prescribed EOHILIA, my EOHILIA actually required a prior authorization.

That is not the end of the world for you. If your EOHILIA does require prior authorization just go ahead and work with your doctor. Once you're approved you can go to EOHILIA’s website. And if you're commercially insured, get your copay card.

And I would just say make sure that you work with your doctor and advocate for yourself and be persistent.