Hi, okay, so I just I'm going to introduce this session, Dennis, and then I'll introduce you. So, this is our ASGE ARIA EOE program with the patient experience, with a goal to understand the symptoms and signs experienced by patients with EOE, to review the testing and treatment patients with EOE must undergo, to learn what patients value in the treatment options for EOE, to acquire an understanding of adverse events with available treatments for EOE, and to understand the importance of clinical follow-up and its impact on patient outcomes for EOE. So, we have the distinct pleasure of having one of my patients join us today, who I've had the privilege and the opportunity to treat and get to know over the last decade. So, I would like to introduce you to Dennis. Dennis, you can say hello, and then I have some questions to start. And what we'll do is we have some questions that we'll go through together, and then we'll open it up to the audience and give them the opportunity to ask you questions. So, Dennis, thank you so much for being here. Thank you so much. Okay, so let's get started. What I'd like to know is tell us when and how you were first diagnosed with EOE. I think this group is really interested in your EOE journey and how that came about. Yes. So, I was first diagnosed when I was 24, so that was about 14 years ago. I was actually going to the GI for a different issue, and I just happened to mention that I was having trouble swallowing. And so, with that, the GI doctor, this was in Rochester, so I was living, I was not in Chicago at the time. So I had an endoscopy there, and that's when they diagnosed me. And they then sent me to an allergist for a skin test, which ended up not being helpful in terms of further diagnosing and helping to understand my EOE. But what happened there was the allergist happened to know, I told the allergist that I was moving to Chicago, and that's when I was able to connect with Dr. Gonsalves. But I got diagnosed at the age of 24, even though I was having symptoms since I was about 15 or 16. So there was a long time before I got diagnosed and treated. So Danis, tell me about that. If you were having symptoms when you were 15, what led to that kind of long span before you got diagnosed? Did you mention this to people? Did you see other physicians? Describe that to me. It was the kind of thing where, so I was a young person. My main symptom was having trouble swallowing while I was eating, and I would have a lot of episodes where I would be choking during a meal. The difference was I was still able to breathe, so it was really hard to describe to the people around me what was going on. And I think people just thought that I was a slow eater. People in my life didn't take it very seriously, and I didn't know how else to advocate for myself at that age. So I just thought I was eating too fast, even though I was eating slower than everyone else around me. And it just led to quite a few really embarrassing situations for me that I just remember. I was traveling abroad in Germany, and I remember a situation where I had to leave because I was having a really hard time. But for some reason, for whatever reason, the people, the adults in my life just didn't think that I needed to see a doctor for that. So I just lived like that for a while, and I sort of developed workarounds and was avoiding food maybe without even realizing it. Certain foods that I knew would make me have those experiences. And what were some of those other workarounds? You said that you were avoiding some foods. What other things did you do? It was mostly that. So I knew that raw vegetables and meat were my biggest triggers, and I just wouldn't eat those things, especially when I was with other people, because I was always really nervous that would happen in front of other people. So yeah, it was mostly avoidance. So when you finally got yourself to see the physician in Rochester, what pushed you over the edge to reestablish care, go back, and describe the symptoms that you were having? What got you over that hurdle, or how did that happen? Oh, it was honestly, I think the doctor asked me. So I went there for not the swallowing issue. And the doctor just happened to ask me, are you having trouble swallowing? And I believe I was at the GI because I was having a hemorrhoid problem or something. It was just very different from that. But he did ask, I think he asked that question, and I couldn't say no. And that was the kind of turning point there. So when you first got the diagnosis in Rochester, what was your understanding of EOE? What was the description that was given to you? What did you think about? I know you referred to the allergist, but tell me a little bit about that discussion. When I had my follow-up after the endoscopy, first of all, it was a really painful experience because they removed a stricture, and it took me a long time to recover from that. So I had high kind of anxiety already. Going back for my follow-up, the doctor didn't explain it very much. I remember him saying he believes that I have EOE. It's a chronic condition. And he said the words, it's not necessarily linked to cancer, but I can't remember what else he said, but just hearing the words cancer also really scared me. And I didn't really get a lot more information after that. It was actually at the allergist where I could kind of process some of the really brief information that I got from that original GI doctor. And then at the allergist, I know you got some allergy testing. Then what kind of happened in your EOE journey from that point to getting over to Chicago? Yeah. So I was already planning to move to Chicago, and the allergist kind of said we can't really... They did do some skin tests. They did find that I had some environmental allergies, which I already knew. But the allergist said we can't really do anything. We can't really test and learn more about your EOE symptoms through this method. But he said if you're going to Chicago, he knew that Dr. Gonsalves was doing research and said this would be a really good connection to make since she's already researching in this field, in this particular disease. So that was kind of in the spring, and I moved that summer. So I was able to then that winter get connected and get an appointment at Northwestern with Dr. Gonsalves, with yourself. I know I'm talking to more people, so I'm trying to be... So, Dennis, I guess at that point, talk us through the journey in terms of our conversation, what workup we did, what treatment plan you landed on, and then we'll go through a few additional questions and then have it opened up to the audience to kind of ask you a little bit more about your journey. I think at first, you helped me kind of understand more what it was going to mean having a chronic condition and that there were some options in terms of treatment. There were some different options that we could pursue. And one of those was medication, and the other, we tried the elimination diets a couple times, and it ended up... I think that over the years, it was really the dilations and the medication that has really helped my symptoms. It was hopeful to... I was hoping that I could find that I just had a food allergy related to EOE, and then I could just eliminate that food and not have symptoms ever again. But that wasn't the case for me. And we tried the food elimination diet quite a few times, and it just didn't quite yield those results. So yeah, so I've just been trying to have regular endoscopies maybe once a year or once every year and a half, and continue to kind of monitor how the medication is, whether it's doing its job and to what extent. And I guess, how do you feel now in terms of your disease being managed? How are you feeling kind of on a daily basis? How is your swallow? Like, what would you describe it compared to when you started this process? You know, I always think about... I think about this often, and it's been 12... You have been my doctor for 12 years. I was doing the math a little bit ago. It's incredible. But I think so often about how much my life has changed, just how stressful eating always was when I was younger. And I think that's been the biggest change for me, is I just don't have that anxiety when I'm sitting down at a meal. And so I think I'm getting a little off track. Am I answering the question? You're answering it just fine. It's funny that you're talking about this, because one of the earlier questions to our panel earlier in the day is, like, why we picked GI and why we did what we do and why we do what we do. And this is exactly why. I mean, this is just an amazing part of the story. So a couple of questions for you, and then we'll open it up. Were there any emergency room visits or severe symptoms that led you to seek any urgent care? You know, I probably should have gone to urgent care or the ER a couple of times, and I just didn't. But there was a time I was in a grocery store and I took a Dayquil pill out of the water fountain. I was still young. I was, like, maybe 18. And I just had that thing lodged in my esophagus for a long time. And again, for some reason, the people around me didn't really they just thought it would pass or something like that. And it did eventually. But so I would say I never actually went to the ER for something related to EOE, but I can think of a few times where I probably should have. So, yeah, and that story is not unusual, right? I think you've been dealing with this for so long. There are people that have been in that situation and just figure out, like, I'll wait a little bit and eventually it'll pass. How has EOE impacted your quality of life? So, pre-diagnosis, it was just the constant discomfort of having really stressful experiences related to eating. Post-diagnosis, I think it's just been dealing with having a chronic condition. I've had a lot of it's kind of it's had a lot of emotional impacts on me as well. And I think I also have to really pay attention to the way that EOE and stress are related in my life, because the symptoms are exacerbated by stress and anxiety for me. So it's been sort of a. Yeah, it's been a bit of a kind of holistic journey in terms of the different ways that my own. And how do you think you've coped with that stressful part of that journey, like knowing that interplay between the anxiety over the chronic disease? Yeah, I was actually able to connect with a behavioral health clinician who in at the time, I was in the hospital for a while, and I was able to connect with a behavioral health clinician who in at Northwestern, who we did some some sessions where we talked about just that. And that was very helpful to kind of have someone to talk to. And in that regard, other ways that I've coped, I think I've just had to kind of put a lot of trust in you as my doctor and in the care team. And it's not something that's something that's been completely out of my control. And that's really hard for me. And I can be kind of a high, high anxiety person or just kind of a worrisome person. And one of my primary care physicians put in my notes that I was delightful and anxious and I thought, yeah, that's probably me. But yeah, so I'm kind of having to having to watch how EOE affects me, not just physically, but in other ways as well. And then thank you for sharing that. That's a lot of vulnerability. And I think we've been very fortunate at Northwestern to be able to have that program. Yeah, it's like this because it is just such an impact on your whole life. Not only you, your family and everything. And I think we as physicians and professionals need to remember that. But tell us about any barriers you've had to pursuing treatments. In over the years, the medications have been pretty expensive. And the fact that for quite a while, there was no drug for EOE that could be prescribed. And so accessing the medication here and there has been a little bit challenging. With going in and out of different jobs and having lapses of health insurance, it's difficult when I need and when I'm relying on having a dilation every year or so. That can be hard when insurance is not always reliable. And another thing I was thinking about in terms of barriers, if I'm traveling, I always feel uncertain whether a doctor will be able to be equipped to kind of treat me because it is such a rare disease, it's becoming more and more commonly researched now. But I think that worry has always been on my mind and I've always kind of also worried about moving elsewhere and not having the same level of care and expertise nearby. Well, thankfully, I mean, we've hopefully made some significant strides in that piece of it in terms of increasing awareness across the country and educating other physicians and hopefully we've made some progress there. I'll ask one last question, Danis, I have a whole bunch, but I'll ask one last one and let the audience also interact with you. But what are you most fearful regarding your EOE? I still think about that initial doctor's appointment I had where I was diagnosed and the doctor mentioned cancer. And sometimes I just have these fears of what will this, well, you know, what will this disease lead to long-term? And I think another fear kind of goes back to the access of care as well in terms of it being a little bit more rare. But I think a lot of my fears have sort of, yeah, I don't think I have as many fears today about having this condition, so. Great, I'm happy to hear that. Yeah. So I will say, you know, like I started off saying, I've had just the amazing privilege to get to know Danis and take care of her over these past, I guess, 14 years now. And, you know, one thing that always strikes me is she has always been so incredibly pleasant, delightfully pleasant, but really very interested in her disease and wanting to know more about EOE and trying to understand mechanisms behind this and trying different treatments and being very honest about her history and her feelings and her anxiety over all of these things. And I think that partnership has been critical to trying to get her better care and ultimately treating her as that whole person. So I wanna give enough time for our audience who is here and very interested in learning about your journey so they can ask you questions. I do ask them if you can please use the microphone because since we're online, we can't hear you. So this is open to questions. And Dr. Snyder and Dr. Yoon, if we can't hear the questions, if you can just repeat them in the microphone for Danis, please. Hi, Danis, can you hear me? Yes, we can hear you. First, I just wanna thank you on our behalf for just sharing your story today and your journey. It really helps to get another perspective, especially from the patient side, because we are a lot from the physician, clinician and industry, but that's an important point of view as well. Quick question. So in your journey with EOE, can you share a little bit? I know you touched on it as far as the elimination diet and how that was for you. Yes, I tried the elimination diet twice or three times and it was about, it's been a long time. It's been about 10 years, I think. So I think there were seven foods that I eliminated from my diet, including milk, nuts, soy, wheat. There were more, fish. And so I went for a period of time without all, I think it was seven, all of those seven different foods. And then I would have an endoscopy and then add to see if that made any changes, any positive changes. And then I would add slowly one or two foods back and then again, have another test to see if that changed anything. But in my case, it didn't really yield enough information to say whether it was worth continuing. So I didn't actually do the full process. And it was very frustrating for me because I just wanted it to be so much more clearer than that. And then there was another time where we tried it again and yeah, it just didn't yield the results that we were kind of hoping it would in terms of making it more simple and finding the triggers to my EOE. I have to give Dana some credit. She really wanted to get to the root cause and do this very holistically and even tried it twice. And she was so vigilant and mindful and adherent to the diet. We partnered her with a dietician. She did everything correct, didn't have any contamination, no slip ups, and she still had a lot. I had to use my own dishes and everything. I know, she went above and beyond and still a lot of inflammation. So we finally said, okay, that enough is enough. You've done the college track. Thanks, Deanna, for sharing your story. Again, I'm one of the GI physicians in the audience and that's really lovely to hear your story and some of our patients feel exactly like you through their journey. Can you maybe share with the audience do you talk to your friends about your disease, how open you are when you're out publicly sitting down to eat, especially before you were feeling better. And did you make excuses or just avoided being social? Interesting question, yeah. How did I talk to people about it? Before I was diagnosed, I didn't know how to talk to people about it. And I had quite a few experiences where it just seemed like people in my family would laugh at me. And it sounds so harsh. My family are wonderful people, but for some reason that was the response. So I didn't talk a lot about it. And when I would have an experience where I was having food stuck in my throat, I would just kind of leave and just suffer by myself for a while. And then in just managing it in social situations when that was not happening, yeah, I think I would just kind of adapt and didn't really want to talk to a lot of people since I've been diagnosed and especially more in the past maybe seven, six or seven years, I've been more open to talking about it because I think a lot of people have various allergies and food allergies. And I think it's really important to, I don't know, for people not to feel alone. So I'll mention it, but sometimes it's just like, it's a long story and it's hard to explain. So it usually depends on the circumstance. I hope that's a helpful answer. I kind of, I can go a lot of different directions with that question. Thank you. I have a question. Can you talk to us about your treatment journey and what you started with, what you're currently taking to treat your disease and what the process was and how long you were on each of them? Sure. I started with using the, I've always used the medications that are usually prescribed for patients with asthma. And at first it was with an inhaler. So like using the liquid that comes out of an inhaler, but swallowing it. And more recently I've been, I think it's the same medication, but I've been using Budesonide and that's also the liquid that is used in a nebulizer. And I will just swallow that and that calms the eosinophilic cells down. And that for some reason works really well for me. And so I've been doing that for maybe at least the past, I mean, probably the past seven years or so. So yeah, it continues to work and I continue to use that. So it's kind of a strange thing to acquire. It comes in a really large box and the nebulizer little, I don't remember what those things are called, but they like to, the companies like to give you like six months worth. So it can be really expensive. To pay upfront for, but you have three months or four months worth accessible to you after that. So. I also, on top of those medications, I also really have to manage my environmental allergies. So I'm continuously on Azirtech and daily Azirtech and really try to keep that under control as well. Cause those symptoms seem to be related to EOE. So Danis, tell us more about your other allergic conditions. Yeah, it's mostly just environmental allergies. So mostly my symptoms with that are just a lot of sneezing and itchy eye. Sometimes I'll have some skin reactions too, but if I stay on Azirtech, I usually don't have a lot of problems. And do you feel like your EOE symptoms get worse during the times that your skin is acting up or your seasonal allergies are acting up? I would say the symptom that gets worse would be the acid reflux. Hi, can you hear me? I can hear you. Okay, awesome. Thank you again for sharing your story. Really appreciate it. Cause I work on consumer marketing. So I think hearing your perspective is really important as we try to develop materials and think about ways to make this disease more well-known. So I'm curious, knowing that you lived so long with this condition and suffered for such a long time and normalize these behaviors, looking back, what do you think would have helped to help you kind of bring these behaviors and these symptoms more to the forefront and kind of push you to recognize them and go to the doctor, whether it's internally or externally or discussions with doctors? I would say, it's tough because I wasn't an adult at the time. I didn't, I think what would be really important is for the symptoms of EOE to be more commonly just known among the public, like just among most people, because I think that would have been really helpful if people around me noticed that this was something that seemed to be a pattern and kind of advocated for me when, or even just said, you should probably tell a doctor about that. So, I guess that's what I would say to your question is just people, more people being aware of the disease, even if they don't personally have the disease so that they can kind of notice it and help other people advocate for themselves. I think, Dennis, you're raising an excellent point. I mean, you kind of struggled for a long period of time kind of telling people and people not kind of taking you seriously. And this is a story I've told you that we hear over and over again. And a lot of times, patients come to us after talking to other patients, whether or not it's their colleague at work or a friend or someone that they started dating who had similar symptoms that ended up having EOE and that's how they learned about it. So I think your suggestion about kind of making some awareness in the public domain is really important. We're doing lots of strategies on the professional end, but you're right. So that families and friends know more about this. Thank you. Thank you so much for sharing. You've been amazing and very vulnerable. And we appreciate it. One question, now that your EOE is a little more controlled, is there anything that you like to indulge in that you couldn't have when your disease was untreated? Honestly, I'm still not a huge meat person, but like I'm at a picnic or something, I just don't have the anxiety about like, oh, I have to eat this food, but it's going to take forever. What do I like to indulge? You know, I'm a big ice cream fan and that's always been very, ice cream, yes. And also just, I really do love like veggies and eating salad and that kind of thing. And that's a lot, just a lot easier when you can swallow. So, yeah. So Janice, I guess one of the questions that someone had too, is kind of talk us through what was important to you as you were picking through treatment options? Like after we were talking about the pros and cons of things, what was going through your mind in terms of your priorities and how you were picking things? My biggest priorities was I wanted to make sure that, I wanted to see if there was a way that my symptoms could be treated in the most, I guess I want to use the word natural way. I think that's where the diet sounded really actually attractive to me, was that if there was an allergen that I just could stop eating, I wanted to do that. So I wanted to kind of be straightforward and kind of hands-on in terms of my own treatment. And then, and then I also just wanted to be able to, have a very flexible lifestyle. I wanted to continue to travel and that kind of thing. So making sure that ways that I was treating my disease would be portable and movable and that kind of thing, like the medication that I would be taking. And yeah, that ended up, that turned out working out fine, so. Anyone in the audience have additional questions for Danis? I think those are all the questions we have for right now. Thank you so much. We really appreciate it. Okay, Dennis, thank you so much for joining us today. Thank you for inviting me. It was great to be here with everyone and yeah, it was a great opportunity. Thank you.

Eosinophilic Esophagitis

patient journey

chronic condition

treatment

public awareness

patient-clinician relationship

quality of life