Real Talk: Eosinophilic Diseases

About Real Talk: Eosinophilic Diseases

Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.

Publisher

American Partnership for Eosinophilic Disorders

Category

health & fitness · health & fitness

Language

en

Explicit

No

First episode

17 May 2021

Latest episode

24 Sept 2026

Latest episodes

61 episodes in the feed.

1. 

   24 Sept 2026

   Community Conversation: Living with EoE from Toddler to Teen

   Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Amarah, a high school senior and patient advocate living with EoE and several other chronic illnesses. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:48] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:07] Holly introduces today's topic: eosinophilic esophagitis (EoE). EoE is a chronic allergic inflammatory disease of the esophagus. [1:19] EoE occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable. [1:30] Holly introduces and welcomes today's guest, Amarah, a high school student who is a patient advocate living with EoE. Welcome, and thanks for joining us. [1:37] Amarah thanks Holly and Ryan and says she is very excited to be here. [1:50] Amarah says she is a high school senior. She loves to perform and act. She is also very involved in sports and school activities. She is a cross-country member and a soccer member. [2:05] Amarah was diagnosed with EoE when she was very young. She has done every treatment you can think of. She has had foods that she was able to eat, and then she couldn't eat them, and then later she could go back to eating them. [2:19] Amarah says it feels like she has had "millions and millions" of scopes. She has done transnasal scopes and regular scopes. [2:28] Holly says she and Ryan have been on numerous types of therapy and tried diet elimination. Holly has done the transnasal scope and is excited to hear that Amarah has. Ryan says he feels left out and needs to try a transnasal scope at some point. [2:52] Holly says we also call it a nonsedated endoscopy. Holly says she loves that Amarah has access to it. Amarah says her state is sparsely populated without those resources, so she flies down to Phoenix, where she used to live, for all of her doctoring. [3:27] Holly says it's awesome for listeners to know that Arizona is a state where they can get treatment. [3:47] Amarah says she had a wonderful primary care doctor when she was little. She was having problems around eight months old. At about a year-and-a-half, her primary care doctor suggested she be tested for this "new" disease, EoE. So she got tested. [4:16] Amarah remembers "not being able to eat anything." That was her normal. She doesn't remember having to take out any foods. The first time she realized she had something more than allergies, she was around 5 or 6 years old. [4:37] At that time, she realized that something was not the same with other kids who have allergies. What she had was different from a normal allergy. [4:50] Amarah says she was about 10 or 11 years old when she had a better understanding of what EoE was, inside the esophagus. [5:16] Ryan compares Amarah's experience to his own, as he was also diagnosed very young. For years, he explained it away as allergies. It's a complicated thing to grasp when you're younger. [5:45] Amarah is on dupilumab, which is helpful for her eczema, which has resisted topical treatments. Dupilumab also helps with her EoE, so now she is able to have dairy, wheat, and soy. She can't eat them at the same level as people who do not have EoE. [6:27] Amarah says she prefers a lot of foods that do not have dairy and wheat in them. It's helpful for traveling. She can eat dairy, wheat, and soy, and her scopes come back clean, which is nice. [6:44] Amarah says that in the past she has done budesonide. She is on PPIs. She had Nissen fundoplication. She also did a drug trial. When she was 12, her EoE got bad. She did a drug trial for an IV drug, and it did not work. She had an adverse reaction. [7:24] Ryan says he was taking a medication for eosinophilic asthma, which was helping his EoE a little bit, but not a lot. Now that he is taking dupilumab for EoE, that is also helping him with his eosinophilic asthma. Ryan agrees that it is such a game changer. [7:58] Amarah says she doesn't have other trigger foods, but she is allergic to shellfish due to IgE, not EoE. Peanuts and tree nuts trigger anaphylaxis. Soy, wheat, and dairy are definitely EoE triggers. She used to have to avoid corn but is able to have it now. [8:38] Amarah says you just know when you eat too much of a food, and your EoE is starting to act up again. [9:15] Ryan advises listeners to double-check with your care team before you start to introduce triggers back into your diet. [9:26] Holly says this is so relatable. Holly is significantly older than Ryan and Amarah and didn't get diagnosed until she was older. She loves how Amarah articulated the different paths she has been on as she was growing up. [9:55] Holly notes that Amarah was at the rise of new treatments that could give her hope to try. [10:07] Holly asks Amarah to explain to listeners the Nissen fundoplication. Amarah says she had it when she was about four, for her GERD, which is acid reflux. She says some kids with EoE have it done; some do not. [10:50] Amarah says the sphincter between her stomach and esophagus didn't fully close. The doctor said he had never seen a sphincter look so bad. [11:04] They did surgery to take a part of the stomach and sew it up so the sphincter closes when food goes down the esophagus, so it stays in the stomach. Amarah says you should not be able to throw up after the surgery, but she still has that ability. [11:42] Amarah says the surgery can get looser over the years. She has had a couple of tests where the doctors monitor how loose it is. [11:50] Holly thanks Amarah for articulating what Nissen fundoplication is. Holly is fascinated that Amarah is still able to vomit. That's an important thing to think about with EoE. Holly had the same procedure twice before they knew she had EoE. [12:53] Amarah says EoE has a lot of layers. It's very complicated. It's very hard to describe it. It takes a lot of extra steps [to manage it]. [13:05] Amarah explains using another diagnosis she has: mild dyslexia. She has to put in more effort and work to do school assignments because she's in advanced classes that require a lot of reading, writing, and spelling. [13:25] EoE is similar in the way that you have to have the extra steps in order to manage it. She wishes people would know that it's a multi-step process. It's not just one and done. [13:38] Amarah has been looking at colleges. One of the things she is looking for is whether they have cafeterias she can use. Do they have a disability program she can use and get accommodations for her needs? Do they have a kitchen she can use? [13:57] Amarah says even though she can have all these different foods, she is still anaphylactic to peanuts and tree nuts. Because EoE can randomly flare up, it's important to her that she has those options. [14:11] Amarah says EoE is very layered, and she wishes people would understand that more. It would be more helpful for the level of acceptance and understanding, overall, of having EoE, especially as a teenager. [14:34] Ryan says that when he started college, he sat with the university dining hall and the office of disability services to explain his EoE, EoE triggers, and anaphylactic allergies, and to ask if he could eat at the dining hall. They offered the salad bar. [15:03] The dining hall couldn't accommodate his needs, so he was able to get a dorm with a kitchen so he could prepare his own food. [15:18] Ryan hopes that 10 years after Ryan started college, the university Amarah chooses will be more understanding of EoE and other allergies. [15:56] Holly says that as a speech pathologist, she sees people with all diagnoses. There are still schools that don't consider EoE a disability. It's very important to think about accommodations. A patient chose to change schools because of the lack of accommodations. [16:36] Holly is 42. When she went to school, she didn't know she had EoE, but she had IgE-mediated food allergies, threw up often, and could only eat certain things prepared certain ways. The school said she could eat at one dining hall, but it still wasn't safe. [17:00] Holly says it has changed in a good way, but in some places, it has not, because some people still don't understand. [17:11] Holly talks about Amarah avoiding corn and different things. People don't realize you can have an EoE trigger to very different types of foods, not just ones that you are IgE allergic to and need an EpiPen® for. That was key information for Amarah to bring up. [17:35] Amarah enjoys participating in her school's speech, debate, and drama team. She used EoE as the topic for her informative speech project. Holly watched a video of it, and it was amazing. Holly asks how Amarah came up with the topic. [19:16] Amarah says that the previous year she had done an informative speech on the history of My Little Pony, of which she is a fan. She decided that for the next year she would do an informative speech on one of the six chronic illnesses she has. [19:56] Amarah considered which of her illnesses affected her the most. She picked EoE to learn more about it for herself and to explain it better to others, more than just saying she has allergies and can't eat that. [20:03] Amarah wanted to create something that would be digestible by everyday people for a basic understanding. She had 10 minutes for the speech, so she didn't get into the nitty-gritty of it. She really liked that she got to share it with people. [20:24] Amarah says she met a judge whose brother had just been diagnosed with EoE. She met another kid who had EoE. He told her he never thought he would see somebody talk about EoE in an informative speech. [20:50] Amarah says that sharing about EoE was important. She loved doing it. [20:57] Holly says she loves that Amarah used an outlet she enjoys to share something medically significant in her life. [21:14] Holly shares how her soccer teammates reacted when she had problems swallowing. She didn't know she had more than food allergies. She and her teammates did a drama, with her as a character always having to vomit. It was releasing to do. [22:02] Amarah says the informative speech was extremely therapeutic for her. One of her best friends since sixth grade told her, "I had no idea that's what that was." Sharing it with people was very helpful for Amarah and, she hopes, for others. [22:35] Ryan says it was cool that she was able to connect with others with EoE or with relatives with EoE. It is a rare disease, but people can get the diagnosis more easily these days. [22:51] Ryan says the speech was only 10 minutes, but Amarah fit so much in those minutes, clearly and concisely. He was very impressed. [23:22] Amarah says she used 10 sources for her research. APFED was one of her sources. She learned about the number of people who have EoE. It was interesting to learn the difference between the world rate of EoE and the U.S. rate of it. [24:00] Amarah had not known it was equally common among everybody. Age, gender, and ethnicity do not matter. That was cool to learn. [24:18] Amarah says it was sad to learn of the lack of public awareness. She learned that the average age of diagnosis was 35 to 50 years old because people aren't aware of it. That was saddening for her. [25:38] Holly says it can be a missed diagnosis for a time, and it creates more inflammation in certain areas to make things worse. Holly wasn't diagnosed until she was 25. People just thought she was attention-seeking to vomit all the time. [26:13] Holly says her primary caseload is mostly people aged 18 and up who are newly diagnosed. It's not young kids who are getting diagnosed, like when she worked at a major children's hospital. [26:39] Holly says Amarah's speech was very informative and well-articulated. It was also dramatic, like a performance, while giving a lot of good information. Holly says it helps people retain information if they're captivated by the presenter. [27:18] Amarah hopes her peers learned a basic understanding of EoE and some of the ways it works. She covered different treatment plans and food trials, which her peers don't understand until she explains them. That was important to her. [27:47] Amarah says trying to figure out a way to describe a food trial to somebody who did not know took her a lot of rewrites. [27:57] Amarah says her last paragraph was about public awareness, why you should care about EoE, and what you should know about it. It's becoming a more prevalent disease. [28:31] Amarah says that having a basic understanding of EoE creates more acceptance. That's one of the things Amarah hopes to improve in the world. [28:48] This year, Amarah is writing a Persuasive Essay on why disability should be more prevalent in media because of the level of diversity that it could provide. [29:03] A lot of people, when Amarah tells them about her disability and chronic illnesses, say, "I am so sorry for you. I feel so bad for you. That must be awful. It must be absolutely horrendous for you." [29:20] Amarah says these are sometimes the same people who say that they care, but then they do not accept her or her food allergies. They don't accommodate her. They still eat peanuts around her and refuse to wipe their hands. [29:45] Amarah sees there is a big difference between acknowledging it and accepting it. She used the speech to show people the disability and disease of EoE, some reasons they should know about it, and why they should accept it. [30:10] Amarah used self-deprecating humor, one of her favorite things to do. Amarah has also done quite a few stand-up comedy acts, which involve self-deprecating humor. She says it's a little bit of a way to cope. [30:32] Amarah wanted to make something that people would engage in. If she stood up there with a monotone voice for 10 minutes, nobody would remember anything. [30:41] Amarah says performing like that and having a space where she could show a little bit more of herself that she doesn't normally show to people was not only therapeutic to her, but she hopes that it showed people what EoE is. [31:04] Holly says, "You just made me cry." It's a hard life lesson when you have chronic illnesses. Holly and Ryan understand that. [31:20] Holly tells how important it is to her to see disability in the media, whether it's a patient in a medical show that has EoE, or a model in a brand-name ad that uses a cane, as Holly does for a different disability. It hits her in a way that's different. [31:58] Holly says that seeing and hearing things in the media that are a part of dealing with her disabilities makes her feel included in a way that she never felt with some of her "closest" peers at the time. [32:12] Ryan says it's wonderful that Amarah is doing this advocacy work through an outlet that she really enjoys and spreading that awareness outside some of these patient advocacy communities. Lack of awareness is an issue. [32:30] Ryan says people care and want to be accommodating, but if they don't understand it and it's not being presented to them in a way they can parse through and fully understand, it's hard for them to make those steps to be accommodating. [32:43] Ryan is glad that Amarah is continuing her advocacy work through the essay she is working on in the Speech and Debate Club. [32:52] Ryan reflects on how great it was to have Amarah join as a patient panelist at the Annual Patient Education Conference, EOS Connection 2026, in Denver, and answer questions for a sizeable audience. [33:08] Ryan says it was wonderful to see a high school student fielding questions. It was helpful for all the participants in the audience as well. [33:27] Amarah says she absolutely loved it. It was wonderful. She loved hearing the other panelists' patient stories, and in general, hearing every other kid's experience with EoE. They were all different. [33:50] Amarah enjoyed sharing her story and having a platform to relate to people. She remembers saying, "You know when your EoE is acting up because you can't eat rice. It starts to get stuck in your throat," and everybody in the audience started nodding. [34:21] Amarah says having that relatability was helpful. She loves speaking in front of an audience, so that was great, too. [34:33] It was a different format from the informative speech. Amarah says having to think on her feet meant she had to be more conscious of the words she was going to say. Her informative speech had a written, memorized transcript. Even her hand movements were practiced. [35:22] Amarah says being able to talk about her biases with EoE and experiences she has had was helpful for her, and she hopes for other people, but very different from her informative speech, which is not supposed to be biased at all. It's not persuasive. [35:48] Amarah says there were multiple times when she was writing her informative speech that she realized she could not put a sentence in it because it showed bias. She couldn't say, "you shouldn't be mean to people with EoE," for example. That's bias. [36:21] Amarah says on the patient panel, she was able to do that. A lot of the experiences that she related on the patient panel were things she may have told her parents and some family members, but not anyone in her friend group. [36:48] Amarah says sharing these experiences and how some of those events had made her feel or had impacted her was something she was not able to show in her informative speech. It was helpful to share her experiences on the patient panel. [37:26] Ryan says, for our listeners, you can still access the patient panel online. We have on-demand content. We'll link to that in the show notes for this episode. [37:36] Ryan says people can go back and watch that and hear from you and our other patient panelists. We had a great range of panelists up there. Ryan asks if Amarah learned anything that stuck with her from the panelists or presenters at this conference. [37:52] Amarah says one of the patient panelists was talking about EoE in the workforce at her job. That was not something Amarah had thought about before. She found it really helpful and something that she will have to think about more in the future. [38:13] Amarah met a teen who talked about his experiences of having EoE while being on sports buses and sports teams. Amarah found it helpful as she is on sports teams. The student told everyone on his team about his EoE. Amarah found that interesting. [38:47] It gave Amarah some ideas on how to talk to people on her teams. Amarah just loved meeting all of the people at Eos Connection and learning about their different experiences and how she could improve some of her future experiences. [39:10] Holly says a key point of the conferences is learning what's coming next in terms of treatment, diagnosis, and all the wonderful things you see health providers doing to support this diagnosis in the world. [39:29] Holly says when you meet someone else who's going through a very similar experience, there is nothing quite like it. Holly talks about learning from the positive attitudes of other patients she meets at the conferences. [40:12] Amarah tells EoE patients, "You don't have to tell people if you don't want to." She is a very private person when it comes to her medical stuff, especially during a flare or when there is something new happening. [40:45] Amarah says she doesn't share it with people until she fully knows what's going on. "You don't have to share it with people if you don't want to." [40:54] Amarah continues, "Granted, you should probably share your anaphylaxis with your teachers. 'Please don't bring peanuts in the classroom; you will kill me.' But you don't have to get into the nitty-gritty." [41:06] Amarah continues, "You can just say, 'I have a medical disease. It affects me on a daily basis. I don't want to talk about it.' That is completely OK." [41:17] Amarah continues, "You do not have to explain anything to somebody. You are not required to. You don't have to. It is your own body. It is your own choice when telling people things." [41:31] Amarah continues, "It sucks sometimes, and especially kids with EoE, they may have a lot of other chronic illnesses, like me, where everything is combined at once." [41:48] Amarah continues, "Once something flares up, then the other thing flares up. It sucks sometimes. And that is OK. It is OK that it sucks sometimes. You just have to get through it. You can't wallow in it, but you can acknowledge it." [42:07] Amarah continues, "If you sit there and 'everything is fine, everything is great,' well, you know, you're actively having a reaction; it's clearly not. And that is something that I still work on today: pretending that everything is fine when it's not." [42:26] Amarah continues, "You're not going to be perfect. I'm still not perfect. I struggle with talking to people, sharing my experiences, pretending that everything is fine even though I need help, or using self-deprecating humor when it's a serious problem." [42:52] Amarah continues, "You're not perfect. That's OK. [42:58] Ryan says that's such a good thing to keep in mind for the patients out there, that it's a journey. There are ups and downs. Finding your comfort level and maturing about the disorder, and keeping in mind that it's not going to be a perfect day every day. [43:16] Ryan says, Amarah, I'm really glad you were able to join us on this podcast. It was so good to see you at the conference over the summer, as well. [43:21] I think you're such a wonderful patient advocate. I'm so inspired to see you engaging so much with the community both at APFED and more broadly, speaking about your eosinophilic disorder through these other outlets that are meaningful to you. [43:39] I know all our listeners are going to appreciate that as well. [43:44] For our listeners who do want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes. [43:50] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at apfed.org/specialist. [44:00] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out apfed.org/shareyourstory. [44:09] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections. [44:20] Ryan thanks Amarah for joining us. This was such a wonderful conversation, and I'm really glad that we were able to have this discussion today. [44:27] Amarah thanks Ryan and Holly. "I do appreciate it. This was wonderful." [44:32] Holly thanks APFED's Education Partners AstraZeneca (https://www.astrazeneca.com/), GSK, Sanofi, Regeneron, and Takeda for supporting this episode. Holly thanks Amarah. Mentioned in This Episode: APFED on YouTube, Twitter, Facebook, Pinterest, Instagram (https://www.instagram.com/apfedorg/) Real Talk: Eosinophilic Diseases Podcast (https://apfed.org/podcast/) apfed.org apfed.org/specialist apfed.org/connections Eos Connection 2026 Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Tweetables (Edited): "I love to perform and act. I am also very involved in sports and school activities. I am a cross-country member and a soccer member. I was diagnosed with EoE when I was very young." — Amarah "It feels like I have had 'millions and millions' of scopes. I have done transnasal scopes and regular scopes." — Amarah "I remember not being able to eat anything. That was my normal. I don't remember having to take out any foods. The first time I realized I had something more than allergies, I was around 5 or 6 years old." — Amarah "EoE is very layered, and I wish people would understand that more. It would be more helpful for the level of acceptance and understanding, overall, of having EoE, especially as a teenager." — Amarah "Having a basic understanding of EoE creates more acceptance. That's one of the things I hope to improve in the world." — Amarah Guest Bio: Amarah is a high school senior living in Montana. She has EoE and several other chronic illnesses. She loves public speaking and acting. A fun fact about Amarah is that she owns 14 wigs (she loves to create costumes).

2. 

   25 Aug 2026

   Know Your Own Health for the Transition from Pediatric to Adult Care

   Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Timothy Buckey, MD, MBE, an allergy and immunology attending physician with a joint faculty position at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [00:48] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. [1:04] Ryan introduces co-host Holly Knotowicz. Ryan just returned from APFED's 24th Annual EOS Connection Patient Education Conference. It was a wonderful time. Listeners can still check out the resources on demand online. [1:26] Ryan mentions that a handful of people came up to him at the conference to say how much they appreciate the Real Talk podcast. It was wonderful to hear how impactful the podcast has been for them. [1:53] Holly introduces today's topic: how parents and caregivers can help children and teens with eosinophilic disorders build the skills and confidence they need to manage their health as they grow and navigate transitions from pediatric to adult care teams. [2:06] Holly introduces and welcomes today's guest, Dr. Timothy Buckey, an allergist and immunologist at the University of Pennsylvania and the Children's Hospital of Philadelphia. [2:14] Dr. Buckey's research interests include eosinophilic esophagitis, food allergy, medical ethics, and improving access to medical care for vulnerable populations. [2:24] Dr. Buckey thanks Ryan and Holly for having him on the program. He's a long-time listener and is looking forward to the conversation on this important topic. [2:32] Holly comments on Dr. Buckey working with children and adults. Dr. Buckey says he sees patients of all ages, from a few days old at the Children's Hospital through the end of life at the adult hospital. He loves that there's no patient he cannot see. [3:10] Dr. Buckey says, in addition to seeing patients as an allergist/immunologist, he is also a medical ethicist or bioethicist. He is trained in medical ethics, and he utilizes that approach in shared decision-making, trying to understand his patients' goals and values for their health, and making a plan that works for them. [3:31] Holly says her allergist/immunologist at Massachusetts General also sees teens and adults. [3:53] Dr. Buckey says a special aspect of the relationship he has with his patients is that he has been in a fairly similar position, as someone who has dealt with many different allergic or atopic conditions for his whole life. [4:08] Dr. Buckey says his conditions started with asthma as a young child, which he still manages, allergic rhinitis, and environmental allergies. He has been on allergy shots. He deals with atopic dermatitis, or eczema. He has seen an allergist/immunologist his whole life. It feels like full circle to be one now. [4:29] Ryan feels like it's easier from a patient perspective if your physician gets it and can understand what you're going through. [4:41] Ryan says that eosinophilic disorders generally require lifelong management, especially when diagnosed in children. Over time, a patient may need to transition from being treated by a pediatric care team to an adult care team. [4:57] Ryan says that Dr. Buckey, through his work with the University of Pennsylvania, provides a lot of support for young adults going through that transition. Ryan asks Dr. Buckey to explain the importance of transition of care. [5:14] Dr. Buckey breaks down the term into its two words: transition and care. [5:24] Transition of care is a process in which we are shifting from a pediatric health model, in which a parent or guardian is the primary historian, or person managing the patient's care, to one in which the patient becomes the primary point of contact. [5:49] Dr. Buckey says that during this process, our overarching goal is for an individual to begin to develop ownership of their health so that they can take care of their medications, schedule appointments, and know their bodies. [6:05] Dr. Buckey says the second part is care. Not only medical care, but it is a period of life of going through a lot of personal growth. Dr. Buckey's goal is for patients to know themselves and learn to support themselves as independent individuals. [6:30] Holly appreciates that Dr. Buckey talked about the transition at that age when there are so many things going on with becoming an adult. [6:40] Holly says when she worked at the Children's Hospital of Colorado, we thought about this a lot. [7:00] Holly said that when she interacted with patients, she tried to look at them, even if they were little. If they were three or four, she asked them what their favorite foods were. [7:17] Holly says she was trying, as young as possible, to have them feel that they have some say and control over their health, and they can start developing how to be a historian of their medical journey. [7:36] Dr. Buckey says every person matures or develops at different times. Having a strict age cutoff may ignore the unique aspects of each person and their history. Dr. Buckey generally begins that conversation in the teenage years through the early 20s. [8:02] Dr. Buckey says that with some kids, he will introduce the idea earlier than a teenager, based on how much they understand about their health. As they start to switch to adult care, he emphasizes that the transition process is not over at their first adult visit. [8:24] Dr. Buckey says it takes additional visits for that person to understand themselves, to know how to request a refill of their medication, to know how to make the appointment, and to know how to contact Dr. Buckey if they have questions. [8:38] Dr. Buckey says it is a continual process, and it doesn't just stop at that first visit with an adult doctor. [8:45] Holly agrees that people reach maturity at different ages. Holly remembers that when she was in college, she asked her mom to schedule her dentist and doctor appointments. [9:17] Dr. Buckey says it's overwhelming and it can be quite scary. It takes a team. [9:30] Holly notes there are age ranges on the Healthcare Transition Timeline Toolkit for what the provider should be doing to help the patient get ready for transition, and what the caregiver and the patient should be doing. She invites listeners to check it out at eoscare.apfed.org. [9:45] Holly asks about ages when a child would meet alone with their physician for part of the appointment to talk about things they don't want to say in front of their parent. [10:18] Dr. Buckey says it depends on age and individual factors. He says he has met some very mature 10-year-olds and some not-as-mature 17-year-olds. [10:38] Dr. Buckey says he understands how it might be nerve-wracking for parents to ask them to step out, but it is an important part of that person starting to know their own body. [10:50] Dr. Buckey says if he's seeing an individual with asthma, he will have the parents step out briefly from the clinic room so he can have a conversation about possible triggers they may not be comfortable talking to their parents about, such as vaping or cigarette use, and if they have tried them or friends have tried them. [11:20] Dr. Buckey says they will discuss that, and that's not something they always feel comfortable sharing with their parents because they feel like they may be disappointing them. The doctor needs to know it to keep them healthy. [11:44] Holly says in her practice, a lot of teenagers will ask to meet with her if they have IgE-mediated food allergies on top of eosinophilic-related disease. [11:51] They want to know if it's safe to kiss a person if they've eaten this or what to do to protect themselves. If they get this symptom, what should they do? They feel comfortable asking Holly. She's trying to coach them to feel confident in their bodies. [12:22] Ryan comments that he's gone through the transition of care process relatively recently. The conversation has touched on so many things he remembers from the last 10 years of trying to transition. [12:28] Even before that, at eight or nine, when the doctor asked what medications Ryan was on, his mother looked at him and said, You should know this; you take them every day. What medications are you on? [12:43] Ryan says that was super helpful to him, as a young patient, that his parents supported him in making sure he was aware of his health, his treatment options, and was able to guide his own medical appointments, with supervision. [12:57] Ryan had had no idea that he was choking on food or taking extra time to chew. It felt normal, so it was helpful to have a caregiver in the office. His caregiver would say it takes him half an hour to have a handful of crackers. That should not be happening. [13:20] Ryan asked about caregivers helping with appointment management and prescription management. Until recently, Ryan's parents helped him. [13:50] Ryan says, even into your 20s, that transition process is still happening. Ryan asks Dr. Buckey for advice on teens and young adults making their own appointments and dealing with healthcare systems. [14:04] Dr. Buckey says it's difficult to navigate our healthcare system. There are questions about insurance and what is in-network vs. out-of-network. How do you get prescriptions filled? What's covered? Cost? So it's complicated. [14:21] Dr. Buckey emphasizes that when we're talking about this transition process, sometimes a part can get misconstrued: that we don't want parents or caregivers involved. We do. [14:35] Dr. Buckey says his goal is for people to have the community, however they define that, to still be a part of their healthcare. What he is aiming for with this transition is that the individual starts to take control of their own health. [14:50] If making appointments is something they still need some help from their parents, that is them recognizing what they need. [14:57] If they want to come to the visit but have Mom or Dad or their significant other on the phone, because that is the support that they need, then absolutely do that. [15:08] Dr. Buckey says, as we are generally switching over, at 18 into our early 20s, recognizing the support you need is an important part of knowing your own body. [15:20] Holly says that's an important stage, and she got there later. She needed help when she was younger; then, in her teens, she said, "No, I've got it." Now, in her 40s, she would like some help again. [15:37] Holly says it's OK to ask for help when you're feeling overwhelmed, and you can't navigate all these chronic diseases on your own. [15:42] Ryan says this is a topic we're both passionate about. At APFED, we see younger patients stop seeing their care team when they get to their college years. [15:54] Ryan says part of it is they get busy and are not able to engage with the patient advocacy community as much, and part of it is they drop out of care. It's important to have caregivers or your community to support you through that process. [16:07] Ryan says, whatever it takes to stay in care and make sure you're healthy is super important. [16:14] Ryan brings up legal age cutoffs. In his 20s, he has access to his medical records; his parents don't. He still wants their take on some stuff. After he gets an endoscopy, he pulls up MyChart to show his parents his results. [16:38] Dr. Buckey says once we turn 18, we are legally adults. At that point, the patient is the owner of their health and their information. They have to provide access to their parents to be able to see it. That can be done in several different ways. [16:55] If you have an electronic health record, sometimes you can add a proxy, or you can just pull up the results and choose to show your parents. [17:05] Dr. Buckey says if he is seeing an 18-, 19-, or 20-year-old at the Children's Hospital, he will tell them that once they turn 18, he only communicates results to them. [17:16] Of course, they can have their parents, caregiver, or significant other present. That is their choice to invite them into that conversation. That is very helpful for many people. [17:30] Dr. Buckey is a proxy for his parents. Holly is also a proxy for her parents. [17:41] Holly says that having somebody who is in your corner to talk about your results with and talk about the next stages of treatment is always important because it can be overwhelming. [17:51] Dr. Buckey gives kudos to pediatric providers. They are so wonderful, and they build such a great relationship that it makes it hard for us to want to leave. [18:03] When Dr. Buckey was at the point of applying to medical school, his pediatrician told him they needed to have him see an adult doctor. He was reluctant to transition. His pediatrician inspired Dr. Buckey to go into medicine. [18:25] Ryan says it can be a hard transition, with so much else going on that you want to stay in that familiar environment. [18:31] Ryan shares how he recently dealt with transitioning insurance plans. [18:55] Dr. Buckey says the general rule is that you can stay on your parents' health insurance until you are 26. There are caveats for individual persons and individual insurance plans. [19:05] Some people start working and may get health insurance through their job, so you may have your own health insurance at 18 and no longer be on your parents' insurance. [19:16] When you're 16 or 17, it's an important time to talk to your parents, or whoever's insurance you are on, about what's going to happen when you turn 18. [19:26] Ryan says it's specific to each medical plan. He says when he went to college, he was offered a student health insurance plan, but his specialty medications, like biologics, were not covered, only hospitalizations. [20:00] Ryan says it's always good to double-check what your plan options are and what those plans cover, to make sure that you're able to maintain the care you need. [20:12] Holly says that something really helpful is to sit down with the family and help them identify an adult care team that will fit them best as they transition. [20:33] Dr. Buckey says sitting down and having that conversation is an important part of the visit. Talk to patients about where they will live. If you're living away at college or moving away for a job, what geographic area are you moving to? [20:53] If you're going to be on a different coast or city, do you want to switch your care over to that area? Or do you want to keep your care in the area where your parents live and come back during your breaks and see your physician? [21:09] Dr. Buckey says it's also important to have a local provider to go to if something comes up. Talk to your pediatric provider about whether they know adult clinicians who care for the condition that you have in the area where you will be living. [21:30] Dr. Buckey says another important thing to think about is,  when we are in pediatric care, we are often follow-up or return patients. Visits may be of a different duration. Sometimes it's easier to schedule a follow-up visit than a new patient visit. [21:48] Planning that new patient visit in your new area, sometimes weeks or months ahead, is an important part of this transition process to ensure that there are no gaps in the care you're going to be having. [22:08] Holly mentions the APFED Specialist Finder on the APFED website. It's a tool for when you are not part of a multidisciplinary setting or wherever you're going, no one knows who they would recommend in that part of the country. [22:25] There are a lot of good people listed on the APFED Specialist Finder if you are going to be moving somewhere else or getting your care in another place. Dr. Buckey proudly shared that he is on that Specialist Finder. So is Holly. [22:51] Ryan recently moved to California, and he is trying to find care teams there that specialize in EoE. [23:12] Ryan asks if patients transitioning to a new doctor typically need a referral from their existing physician, or do you chat with your insurance company first to help find new care teams? [23:25] Dr. Buckey says some insurance policies do require a referral for each visit you are going to have with your provider. For many policies, you can look online to see who is in-network vs. out-of-network. [23:52] Sometimes there are different costs to see someone who is in-network vs. out-of-network. The differences can be dramatic. Discuss it with your physician or clinician, but also with your insurance company. [24:13] Dr. Buckey says make sure there's no lapse in care. We don't want someone to go without their medication. If you're no longer seeing your pediatric provider, make plans to see an adult provider who can continue your prescriptions. [24:45] Ryan says we see a lot of patients who have an EGID and also other conditions. We see a lot of comorbidities within our community. We have multiple things going on, which can make this transition process especially complicated. [25:15] Dr. Buckey says many people are experiencing different things and may need to see more than one clinician. They probably also have a primary care doctor. They are going to have to switch from each of those clinicians to an adult provider. [25:38] That transition takes time and effort. It can sometimes be a long wait. Beginning that process early will only set you up for success. Dr. Buckey says different health systems will accept different insurances. [26:01] Dr. Buckey says sometimes for specialty medicines, when you switch health systems, the specialty medication may be provided by a different specialty pharmacy than it was when you were seeing a pediatric healthcare team. [26:13] How you schedule appointments, how you speak to someone if you're having new symptoms, all changes as you're switching to adult care. Dr. Buckey says because this is complicated, we do worry that sometimes things can get lost during the transition. [26:37] Planning will only set you up for success, so that nothing gets missed in the switchover process; you have no lapse in medications or procedures that you need, and you can continue to see the clinicians you need to keep you healthy for your best life. [27:03] Holly has learned from her healthcare and working in different hospitals to ask, before picking a specialist, what electronic medical records (EMR) the practice uses. Some can communicate with each other, and it makes the transition smoother. [27:25] Holly says some places have EMRs that don't communicate with other places, and that makes sharing information tricky. Holly has experience dealing with EMRs that do not talk to each other at all. [28:05] Dr. Buckey says if you use an EMR that communicates with others, your care can easily be accessed at different institutions. Dr. Buckey explains how that helps make the transition smooth if transferring to adult care or switching healthcare systems. [28:56] Dr. Buckey says things you need for a helpful transition are to know your medical history, your diagnoses and how they were made, your current medications and dosing, and medications or therapies you tried before that weren't successful for you. [29:31] Dr. Buckey says, as we approach the era of precision medicine where we are treating each person in a different way, knowing what did or did not work for you is so helpful for your clinician so they can continue to help you feel good. [29:49] Holly suggests a role-play. For example, if she's going to see Dr. Buckey with her records from Maine, which do not communicate with his EMR. What should she physically bring to the visit? [30:23] Dr. Buckey says to know what health conditions she is being treated for. In Holly's case, they will talk about asthma and EoE. [30:33] Dr. Buckey would like to know if Holly has ever been hospitalized for asthma, what inhalers she takes, what inhalers she tried before, and if she is on any biologic medicines, the doses and the frequency, and what she tried in the past. [30:53] Dr. Buckey would ask if she's ever had breathing tests, called spirometry or pulmonary function tests. [30:58] Having paper copies is wonderful. You can bring them in, and he will review them at the visit. Dr. Buckey always appreciates it when patients send them to him ahead of time, so he can review them and prepare for a successful first visit for both of them. [31:18] Dr. Buckey says if we're talking about EoE, he will ask when the diagnosis was made, what symptoms led her or her parents to do that first endoscopy or see an allergist, immunologist, or gastroenterologist, when the most recent endoscopy was, and what medications she was on when she had her different endoscopies. [31:40] Dr. Buckey says usually clinicians are keeping track of this, so Holly could ask them for copies of procedures she has had, the last two or three office visits, which are usually pretty comprehensive, and a list of any medications Holly takes. [32:00] Holly appreciates having the ability to send paper records in advance. When Holly sets an appointment, she will fax Dr. Buckey some of her tests and important facts to look at before her appointment. [32:20] Holly says some places won't look at the reports in advance, so she brings a bullet list with her of all the things Dr. Buckey listed for them to look at when she checks in to the appointment. [32:39] Dr. Buckey responds that healthcare is very busy and some clinicians don't have the time to look at reports ahead of the visit, but can take five or ten minutes to look at them at the start of the visit to be successful and have a comprehensive visit. [32:59] Ryan appreciates Holly's point to bring a bulleted list to the visit. Ryan is grateful that his parents kept his records organized throughout his life. For any caregivers listening, set your patients up for success by keeping track of these things over time. [33:24] Ryan has a one-page summary he gives to all new providers of all his hospitalizations over the last 20 years, the medications he has been on, with date ranges, his diagnoses with dates, and different procedures and endoscopies. [33:46] Ryan says that one-page summary is in 6-point font to squish it down to one page. It's helpful to have all that information organized together. [33:55] Ryan invites caregivers: If you have a young patient and you're starting to think about the transition process, start keeping track of all that if you haven't before. [34:03] Dr. Buckey says our health can be complicated. We can have periods when we're feeling great and periods when we're having more symptoms. Having it written down is an easy way to keep track so things don't get forgotten or lost. [34:22] Dr. Buckey often says he appreciates when patients come in with that sort of list of their history because it shows how invested you are in your health and keeping yourself healthy. It's a wonderful way that you can be proactive. [34:40] Ryan says it can feel like a big undertaking if you start now and you're in your 20s. Whenever you can start keeping track of how you're feeling and why, what treatment and symptoms you're having, it's good to have more information than less. [34:58] Dr. Buckey says there's never a period when it's too late. If you are in your 30s or 40s and just starting out, it's very helpful. The provider can prompt you with questions that will help you recall things you had in the past and add them to the document. [35:21] Ryan says it's a very collaborative process. Discuss it with your clinician, who may point out symptoms you should note. [35:40] Ryan asks, when you are transitioning from pediatric to adult care, is it typical for an adult care provider to call a pediatric care provider with questions? Dr. Buckey says in his system, doctors have those conversations, which is a great asset to patients. [36:33] Dr. Buckey says, for example, if I were not their pediatric allergist, but I would become their adult allergist, I would reach out to their pediatric allergist and ask details about their history. I would also reach out to their dermatologist and gastroenterologist. [36:59] It's helpful to ask each other questions, know things to look out for, or things in a person's history that might be helpful as therapies and medications continue to advance that might be a good fit. It helps us to have a good comprehensive plan in place. [37:26] Dr. Buckey says talking to each other helps to provide good longitudinal care. [37:39] Ryan asks about having procedures and allergy testing in a pediatric setting and switching to a new provider. Do adult providers typically want to repeat testing? [38:04] Dr. Buckey says it will depend on each person, when they were performed, and what was performed. If Dr. Buckey is seeing someone for food allergies, was skin or blood testing done last year or 10 or 20 years ago? Last year is pretty current. If it was 20 years ago and you're 22, your body is very different from when you were two. [38:40] Dr. Buckey says if you have asthma and you had a breathing test two weeks ago, that's very recent. If you have not had a breathing test done in 10 years, I probably would repeat it on your first or second visit. [38:56] Dr. Buckey says, for endoscopies, if you have EoE of another EGID, it would depend on timing. Was this done recently or in the remote past? Was it done on the current regimen you are on? Was it done on a different regimen? [39:14] Dr. Buckey says I'm going to ask you if you're having any changes in symptoms recently. If anything has changed how you're feeling, it's probably going to prompt me to do a new set of testing and not just rely on the ones you had before. [39:31] Dr. Buckey says, if you could bring the previous tests to me, I can compare. I can see what your endoscopy looks like now vs. two years ago. It's helpful to have that baseline to compare to. [39:48] Dr. Buckey adds that knowing how you're feeling, or what's been done before, or your medical history, helps clinicians to take care of you as best we can. [40:15] Holly says this is such a needed conversation. It will be helpful for our listeners, both practicing physicians and patients. [40:37] Holly asks what advice Dr. Buckey gives for navigating challenges during the transition of care. [40:51] Dr. Buckey says for every new EoE patient visit, he shares a link to the APFED website because there are such wonderful resources and references there. He explains to them what APFED is, and he provides resources to other websites or research that he thinks is helpful for them, depending on what each person is looking for. [41:31] Talking with your doctor about what you are looking for is very helpful. [41:38] In terms of the transition process, it's an exciting period. We're often going through a lot of big life changes. It could be our first time living away from our parents, having a job, or going to college. [42:05] Know your own health. Learn about your body. We are the best advocates for ourselves. Only you know what you are feeling. Only you can tell your doctor what you're feeling. Taking ownership of your health will set you up for success for a healthy, long life, achieving your goals. Holly says that sums it up beautifully. [42:40] Holly says for listeners who are feeling overwhelmed, unsure, or want to find out more about the transition, eoscare.apfed.org (http://eoscare.apfed.org) is a great site that helps you navigate healthcare for eosinophilic conditions. It also has a tab for building a care team. [43:05] Ryan says it's great when the guest plugs APFED resources! For those who are looking to learn more about transition of care, please visit apfed.org and check out the links in the show notes below. [43:25] If you're looking to find specialists, as you're going through this transition process, who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at apfed.org/specialist. [43:36] If you would like to hear some recent sessions from the 24th annual Eos Connection conference, we had a session focused on transition of care. Those are available on demand online. [43:50] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections. [44:00] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out apfed.org/shareyourstory. [44:09] Ryan thanks Dr. Buckey for joining us today. It was such a great conversation. This will be so helpful for the community. Dr. Buckey says the work of this podcast and of APFED as a whole is so important. [44:36] Dr. Buckey thanks all the patients and colleagues that he has. He has a job where he walks with a smile on his face every day. It's a privilege to take care of his patients and work with his colleagues. Thank you all for listening today. [44:56] Holly thanks APFED's Education Partners AstraZeneca (https://www.astrazeneca.com/), GSK, Sanofi, Regeneron, and Takeda for supporting this episode. Mentioned in This Episode: APFED on YouTube, Twitter, Facebook, Pinterest, Instagram (https://www.instagram.com/apfedorg/) Real Talk: Eosinophilic Diseases Podcast (https://apfed.org/podcast/) apfed.org apfed.org/specialist apfed.org/connections eoscare.apfed.org Eos Connection 2026 Timothy Buckey, MD, MBE Hospital of the University of Pennsylvania Children's Hospital of Philadelphia (https://www.chop.edu/) Department of Medical Ethics and Health Policy Healthcare Transition Timeline Toolkit Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Tweetables (Edited): "I am trained in medical ethics, and I utilize that approach, particularly in shared decision-making, trying to understand my patients' goals and values for their health, … and making a plan that works for them." — Timothy Buckey, MD, MBE "During this [transition] process, our overarching goal is for an individual to begin to develop ownership of their health so that they can take care of their medications, schedule appointments, and know their bodies." — Timothy Buckey, MD, MBE "Having a strict age cutoff may ignore the unique aspects of each person and their history. I generally begin that conversation [about transition of care] in the teenage years through the early 20s." — Timothy Buckey, MD, MBE "Healthcare is very busy, and some clinicians don't have the time to look [at reports] ahead of time, but often, we can take five or ten minutes to look at them at the start of the visit … to be successful and have a comprehensive visit." — Timothy Buckey, MD, MBE "We are the best advocates for ourselves. Only you know what you are feeling inside. Only you can tell your doctor what you're feeling. Taking ownership of your health will set you up for success for a healthy long life, achieving your goals." — Timothy Buckey, MD, MBE Guest Bio: Timothy Buckey, MD, MBE, is an allergy and immunology attending physician with a joint faculty position at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia, and a secondary academic appointment in the Department of Medical Ethics and Health Policy. Dr. Buckey completed his allergy and immunology fellowship training at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia. He attended Georgetown University School of Medicine. He also received a Master of Bioethics from the Perelman School of Medicine at the University of Pennsylvania. Several of Dr. Buckey's research interests include eosinophilic esophagitis, food allergy, medical ethics, and improving access to medical care for vulnerable populations. He was the lead author on one of the largest studies evaluating the rate of eosinophilic esophagitis during food allergy oral immunotherapy. Dr. Buckey was also the lead author on the pivotal 2024 food allergy study, which utilized allergist-performed oral food challenges to demonstrate there are no differences in food allergy outcomes based on race or ethnicity. Dr Buckey has also become a pioneer in investigating the intersection of medical ethics with allergy and immunology. Dr. Buckey developed the first comprehensive ethical framework for the specialty of allergy and immunology to assist clinicians with navigating ethically complex decisions in their clinical practices. He utilizes this patient-centered approach in the clinic when caring for patients with allergic and immunologic conditions of all ages. Website profile: pennmedicine.org/providers/timothy-buckey

3. 

   22 Jul 2026

   Research, Factors, and Protocols Associated with Dysphagia and EoE

   Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Claire Beveridge about EoE and dysphagia. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:49] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today's topic, research on eosinophilic esophagitis (EoE) and dysphagia. [1:24] Holly introduces and welcomes today's guest, Dr. Claire Beveridge, a gastroenterologist at the Cleveland Clinic. Dr. Beveridge heads the EoE Adult Clinic and the Transition from Pediatric to Adult EoE Clinic. [1:36] Holly, a speech pathologist, says she is very excited to dive into the research Dr. Beveridge did with EoE and dysphagia. Holly asks Dr. Beveridge to share some of her background. [1:48] Dr. Beveridge was recruited to the Cleveland Clinic about five years ago to head the EoE Center. She loves the work they have done there. [1:57] Dr. Beveridge says it's been nice to center everything on their EoE patients and have multidisciplinary care with speech-language pathologists, allergists, dietitians, pulmonologists, and more. It's been a great experience. [2:15] Dr. Beveridge says the other thing they are really proud of is having a Transition Clinic. It can be tough for patients to transition from pediatric to adult care. [2:23] Dr. Beveridge says this is something she was inspired to do when she was finishing her training at the University of Pennsylvania, where they had been doing some of that. It was really important to her when she joined Cleveland Clinic. [2:34] Dr. Beveridge, with her Co-director, Dr. Sophia Patel, helps patients transition from pediatric to adult care. [2:41] Holly speaks of the challenge of transitioning from pediatric care at a multidisciplinary clinic to adult care. [3:08] Dr. Beveridge says you can't do any training at Northwestern without loving the esophagus. She did her residency there, got exposed to esophagology, and got to know Dr. Gonsalves and Dr. Hirano really well. [3:33] Drs. Gonsalves and Hirano are really big names in EoE. Dr. Beveridge was fascinated by the disease. She loved the patients and wanted to help them and make them feel better. It's a burgeoning field. [3:48] Dr. Beveridge says that it's only in the last few years that we have had FDA-approved medications for it, and that we have been jerry-rigging asthma medications to treat our patients. [4:03] Dr. Beveridge says it's really exciting to see the treatment options we can offer. [4:10] Ryan says it's exciting to see how EoE management has changed. [4:16] Ryan says we see so many patients who are untreated or poorly treated for years, who have restructuring of their esophagus and present with dysphagia, or have strictures and rings leading to food impactions; the long-term effects of untreated EoE. [4:34] Ryan says it's exciting that now we do have better treatment options for people, right off the bat. [4:43] Dr. Beveridge conducted some research on EoE and dysphagia and presented a poster at the 2024 Digestive Diseases Week. [4:51] The poster was titled, "Esophageal Luminal Diameter is Associated with Dysphagia and Eosinophilic Esophagitis: Implications for Endoscopic Dilation Therapy." [5:11] Dr. Beveridge says dysphagia means issues with swallowing. It's a feeling of something getting stuck or something slowly moving down. There are also subtle symptoms that can happen. [5:31] Dr. Beveridge says patients who have had EoE for a long time become accustomed to how they swallow. Things a patient may think are normal, like needing water and taking a sip after each bite, are learned accommodating behaviors. [5:58] Dr. Beveridge says accommodating behaviors are that you're needing to imbibe extra water, you're modifying how you're eating, extra chewing, avoiding pills, avoiding other certain foods, and things like that that can be modifying factors. [6:19] So, difficulty with swallowing, things getting stuck, slowly moving down, but also keeping in mind some of those modifying behaviors that we may end up using. [7:23] Dr. Beveridge says her motivation was seeing patients in her clinic who were having persistent symptoms, and getting them into histological remission. The goal of treating your EoE is to get the eosinophils less than 15; close to zero is great. [7:45] Dr. Beveridge says we have patients who, despite doing their endoscopies and taking biopsies, things look fine; they're still having issues with swallowing. Why is that the case? [7:58] Dr. Beveridge says in a different research paper she had done, looking at some of the predictors for that, one of them was fibrostenosis. There are also other things that can contribute, like esophageal hypervigilance and a fear of swallowing. [8:21] If a patient has had a food impaction, it's going to be scary to try to swallow again. Some of it is behavioral, but some of it is structural. At what luminal diameter (the size of the esophagus) is that causing a clinical problem for patients? [8:45] A normal esophagus is 20 to 24 mm in diameter. Traditionally, around 14 to 16 mm in diameter has been when we say that patients get symptoms or they're feeling the issues with swallowing. [9:03] Dr. Beveridge says a lot of those studies have never been done specifically for EoE patients. [9:08] Dr. Beveridge wanted to know, if we exclude cancer, if we exclude acid reflux, and all of these other things, and just look at our EoE patients, what size of the esophagus are we looking at? [9:20] Dr. Beveridge explained they specifically looked at patients whose histology was under control and then compared those who continued to experience symptoms with those who did not. The goal was to determine the histologic threshold at which patients begin to experience dysphagia. [9:54] Dr. Beveridge says they saw this threshold at 16 mm (1.6 cm). That's still quite the difference from a normal esophagus of 20 to 24. [10:08] Dr. Beveridge says our esophagus can definitely handle being smaller, but then, once you get to that 16 mm, for a lot of patients, it really does cause that feeling of things getting stuck or slowly moving down. [10:20] Holly says what's cool about the retrospective data Dr. Beveridge looked at, and the parameters she placed in the research, is that when a patient goes in for an endoscopy, the doctor can measure and say maybe this is why dysphagia is going on. [10:48] Holly finds that adult patients with food impactions are scared to eat the same food again. She loves having this data to share with patients and say, let's look at what your esophagus measures at. Let's do a smaller bite. Let's add a dip and liquid. [11:12] Holly says data can push so much progress. Holly, having multiple chronic illnesses, loves when doctors can say, this is going to be safe. This is the mode that we're going to go with. [11:30] Dr. Beveridge says in the retrospective study, they were looking at stuff that had already been done. We decided from here to assess patients more prospectively. All of this was based on chart review from when the note said symptoms or no symptoms. [11:53] Dr. Beveridge says when she started this EoE clinic at the Cleveland Clinic, part of it was to standardize better how we were collecting data from patients to understand their symptoms. [12:07] Dr. Beveridge has a standardized questionnaire for patients to understand if they are having heartburn and difficulty with swallowing, so she can know that at each point of their endoscopy. [12:18] Dr. Beveridge says it will be nice, hopefully in the future, when she can give a little more detail and depth in terms of assessing this more prospectively and seeing if that same number holds up or if she needs to tweak it a little bit. [12:34] Holly thinks it's fascinating. Numbers give us so much information, to know if my mm is this versus this, the next time, or during allergy season or not. [12:53] Ryan says it's cool that you're able to look back at existing patient records and identify this information. Now we have that 16 mm number in mind to say maybe this is where we'll start to see increased risk of dysphagia in these patients. [13:28] Dr. Beveridge says, how we had to do it retrospectively was based on the endoscopist estimating what the size is. Gastroenterologists recognize they're not always the best at estimating the size of the esophagus. [13:50] Dr. Beveridge says, if your endoscope could not pass through, or it was snugly passing through, you know the diameter of the endoscope. If a dilation was done, at what size dilation do we start to see a disruption? [14:19] Dr. Beveridge says, the goal of a dilation is to get a disruption because there's scar tissue we want to break open. A patient might think disruption means a perforation or something more scary, but that is the goal. We want to break open that scar tissue. [14:42] Dr. Beveridge says, once we see that scar tissue break open a little bit, then we can estimate what the diameter is, based on the size dilator we used. [15:10] Dr. Beveridge says for adults, we use a standard adult upper endoscope, and that's about 13 mm. The ones we use for kids are about 6 mm. [15:35] Dr. Beveridge says the adult endoscope is around 13 mm, and it's around 14 to 16 mm when we start to see the symptoms. [16:07] Dr. Beveridge says there are two main types of dilation that we do. One is the Savary dilator or wire-guided dilator, a long dilator that stretches the entire esophagus, from the mouth down to the stomach. [17:20] Dr. Beveridge says another way of doing it is while you have the endoscope in, you thread a catheter. At the end of the endoscope, there's a balloon. You fill the balloon with saline up to different sizes. Typically, they go up by 3 mm, so 12 to 15 mm. [18:01] Dr. Beveridge says the catheter balloon dilator is good for discrete strictures because the balloon isn't going to do the entire esophagus; it's just going to do one area of the esophagus, and you're watching it the whole time. [18:19] For the wire dilator, you remove the scope. You're not able to see, so it's important to assess ahead of time how narrow things are, so you start at a safe dilation. You go in each time to see if there's starting to be disruption, and then you can do more. [18:44] Holly asks if a gastroenterologist doing an upper endoscopy with sedation sees that it's tight, would the gastroenterologist automatically do a dilation? Or, can a patient with dysphagia symptoms request to have a dilation? [19:28] Dr. Beveridge says, right before an endoscopy, she discusses it with the patient and gets consent. She asks, even if their symptoms are good, but in the endoscopy she sees a narrowing where she would recommend a dilation, if they're OK with that. [20:05] Dr. Beveridge says, if they're having issues with swallowing, often she will ask if they're OK with her doing a dilation. If she sees a narrowing, she can focus on that area and dilate it. [20:19] Dr. Beveridge says not everywhere in the esophagus can we see as well. The very beginning of the esophagus is challenging to see and challenging to evaluate on imaging. [20:32] Dr. Beveridge talks about empiric dilation. You don't see a narrowing, but you want to rule it out, so you do a dilation at a safe size, like 16 or 18 mm, to make sure you're not missing something up high. [20:58] Dr. Beveridge says she always talks about that with her patients. Most say, go ahead. Some patients definitely want dilation; other patients say no, they really don't. [21:12] Dr. Beveridge then asks the patient if there's real narrowing that may cause a food impaction, would they want dilation then, or hold off for another day? [21:30] Dr. Beveridge never wants to do something the patient is not comfortable with. She also doesn't want them to need another endoscopy unnecessarily, if she can avoid that for them in the moment. [21:46] Dr. Beveridge mentions the BougieCap used in Europe. It's a cap you put at the end of the endoscope. You use your endoscope as the dilator. You watch the whole time. It is hard plastic that causes a nice dilation. We may see it come to the U.S. [22:37] Dr. Beveridge speaks of the FLIP catheter, which is a catheter with a balloon that doesn't cause dilation but distends and helps measure the diameter. [23:33] Holly asks if Dr. Beveridge gives tips to patients on how to prepare for dilation and the recovery process. [23:49] Dr. Beveridge had an upper endoscopy. She says there's nothing like experience to understand it better. She didn't have a dilation, but the biopsies caused discomfort. [24:21] Dr. Beveridge says a lot of her patients have been through upper endoscopies, so they know how it feels. She warns them that the biopsies and dilation can cause discomfort. [24:33] What's challenging is that everyone is different. Some patients are going to be more hypersensitive to it, and other patients are going to say they felt nothing and they were fine. [24:46] Dr. Beveridge says some patients need to modify their diet for a few days to avoid significant chest pain. You never want someone to have to go to the ER for significant chest pain when it will just heal over time, and there's no perforation. [25:12] Dr. Beveridge says other patients will be like her, eating chips and pretzels and saying they're fine. Dr. Beveridge typically has them start with liquids, nothing too hot or too cold, and advance as tolerated. [25:28] Dr. Beveridge says patients can always use TylenolⓇ and over-the-counter numbing agents. You'll still have patients who will get significant discomfort. For the most part, starting with liquids has worked for Dr. Beveridge's patients. [25:44] Holly recommends over-the-counter when her patients call, after she talks to their GI. Holly says after she has an endoscopy, she starts on liquids and shakes. On day three, she's fine. Holly says individualized care is amazing. We all are different. [26:14] In the pediatric setting, the parents get the counseling, and they have not had sedation, but on the adult side, you're talking with the patient, who had sedation. Sometimes they don't remember. [26:40] Dr. Beveridge says when possible, she waits for family members to come back and tells them they're going to have to "be the memory" because the patient probably won't remember this conversation. [26:55] If a patient says no, they don't want them to come back and hear about it, always respect that. But Dr. Beveridge always tells them, you may not remember what we say. [27:30] Ryan asks about data on how many times someone may need dilations. Dr. Beveridge says it comes down to the patient, but the biggest issue can be uncontrolled inflammation. [27:44] Dr. Beveridge says if a patient's EoE is not controlled, inflammation leads to continued scarring down. That's why we talk about dilation as being an adjunctive measure, but not a treatment for EoE. It doesn't do anything for the inflammation. [28:03] Dr. Beveridge says she has patients who ask why she can't just do a dilation every now and then. Dr. Beveridge considers dilation to be safe when needed, but if you can avoid it, that would be nicer for everyone. [28:21] Dr. Beveridge says there's no great data on whether you only need one, or whether you're going to need 10, but one big theme is just: have we gotten your inflammation under control? That's also true for other conditions, such as acid reflux. [28:45] Holly wasn't diagnosed until she was in her mid-twenties, and she had several upper endoscopies as a teenager and college student to dilate her, to help the situation. [29:17] Holly says she had to get more endoscopies to figure out her weird food triggers that are not typical for everybody, so even if she's treated, she still has inflammation. That's why she had so many upper endoscopies. [29:30] Ryan talks about underlying issues causing inflammation. Dilation is not treating those underlying causes. It's just helping with one symptom of this dysphagia, by expanding the esophagus. [29:50] Ryan asks, What changes in symptoms should patients expect after the dilation? Dr. Beveridge says, ideally, if there's been a stricture, you're going to start to feel like your swallowing is better. You can get pills and food down better. [30:07] Dr. Beveridge says, immediately post-dilation, sometimes people feel a little bit worse. Everything you swallow may be uncomfortable for you. But if it's been a successful dilation, hopefully, you're going to feel that things are going down better. [30:40] Holly says she is so grateful that Dr. Beveridge looked into this, and hopefully, there will be a new protocol in the future. Holly asks what other key takeaways from this research may interest Dr. Beveridge in researching something further. [31:02] Dr. Beveridge says, making sure that we're not missing scar tissue is big and important. One thing that we're trying to look at with our Pediatric GI colleagues is what threshold we should be looking at for the pediatric patient population. [31:19] Dr. Beveridge says a pediatric patient's esophagus is a different size than an adult patient's. Understandably, we are more cautious when doing a dilation in the pediatric patient population than we are with adults. [31:34] Dr. Beveridge may recommend empiric dilation for an adult but will feel more cautious about that with pediatric patients than with adult patients. Understanding what that threshold should be for the pediatrics is going to be really interesting. [31:57] Dr. Beveridge says the diameter threshold we discussed is going to be important to know about, but everyone is different. You may have a diameter of 14 mm, you feel fine, and you don't want a dilation; you can accommodate OK. That's reasonable. [32:15] Dr. Beveridge says she has had patients who get up to 18 mm, and that helps them, but they need a little bit more. If someone needs more of a dilation, we do that. Yes, have a threshold to assess, but always assess for what's personal for your patient. [33:04] Dr. Beveridge says not just to assess the luminal diameter, but a thing that is helpful for gastroenterologists to know will be if there are other factors at play. As in her study of dysphagia predictors, anxiety, depression, and hypervigilance can play roles. [33:37] Dr. Beveridge has patients who have to have a critical narrowing for them to finally feel an issue. Other patients, if they have the slightest of narrowing, are feeling something. Some patients are just more vigilant of what's happening in their esophagus. [34:07] Dr. Beveridge says there's definitely a role for asking if your anxiety is under control. If there's feedback in the nerves, should we ask your GI Psychologist to be involved in terms of CBT for your esophagus? Take a look at everything. [34:27] Dr. Beveridge says another part of the study they looked at was: are there different thresholds of eosinophils that we should be looking at? Is it just less than 15, or do some patients need it to be lower? Less than six? Less than 10? [34:43] Dr. Beveridge says look at it as a whole for your patient. [34:53] Dr. Beveridge says next, she will be working on a very long-term project: Can we identify a non-invasive method of screening a patient, diagnosing a patient for EoE, or monitoring a response to therapy? [35:13] Dr. Beveridge has looked at transnasal endoscopy, which is put into this category of minimally invasive. It's still invasive; you're putting a scope through someone's nose, but it doesn't require sedation, which is a nice thing for some patients. [35:29] There's the EnteroTrack, which started in Colorado. A patient swallows a string, and it stays in their esophagus for an hour, and we look at the proteins to see if things are active or not active. [35:45] Dr. Beveridge is also looking at the breath metabolome. If we breathe into a bag and take a look at all the volatile organic compounds that are in our breath, can we find a signature related to EoE? [36:01] It's assessing about 100 different compounds, not looking at one in particular, but how the whole thing looks. What signature is there, based on looking at all the compounds? [36:15] Dr. Beveridge presented some of that data at DDW and has a grant from the ACG to look at this and assess patients with and without EoE. [36:33] Dr. Beveridge says further, doing longitudinal data of looking at patients once they've gotten into remission on treatment and seeing, do we then see a signature change? [36:47] Dr. Beveridge says no one is under any illusion that endoscopies are going away. They will always be part of what we do in gastroenterology, but there are limitations: sedation, a full day away from work, nothing by mouth, and a driver, etc. [37:04] If there are alternatives to help supplement that, it would be nice. One of the barriers for patients doing diet elimination is the number of endoscopies that are required. If there's a way to assess by breath if a food is a trigger, that would be good. [37:32] Dr. Beveridge says that's the big thing she's looking at, but it will take years. It's not going to be a quick, easy one, but it's very interesting to take a look at. [37:45] Holly speaks of how much treatment has changed since she was diagnosed. She has done all the scopes. She says this sounds amazing. She loves that people like Dr. Beveridge are thinking of how to make testing less invasive and more comfortable. [38:12] Dr. Beveridge says another thing she is excited about is the transition of care. She recently did a survey and is analyzing the data to assess what the barrier is from the physician perspective in terms of helping our patients transition. [38:40] Dr. Beveridge is also looking at doing a nice multi-center consensus to help this as well, led by Dr. Sophia Patel and Dr. Emily McGowan, who are fantastic in the EoE world, looking to see how we can make this better for our patients. [38:58] Ryan says, with so much interesting work coming up, we'll have to have you back to chat about some of these additional projects. Everyone is super interested in less invasive stuff and better treatment pathways. Transition of care is an important part of that. [39:11] Ryan appreciates Dr. Beveridge for joining the conversation and hopes to have her back on another episode so we can learn more about EoE and these different future research endeavors. [39:20] For our listeners who would like to learn more about EoE today, you can visit apfed.org/EoE and check out the links in the show notes below. [39:27] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at apfed.org/specialist. [39:36] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections. [39:46] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out apfed.org/shareyourstory. [39:55] Ryan thanks Dr. Beveridge for joining us. This was a fun conversation and really insightful. Holly thanks APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda for supporting this episode. Mentioned in This Episode: APFED on YouTube, Twitter, Facebook, Pinterest, Instagram (https://www.instagram.com/apfedorg/) Real Talk: Eosinophilic Diseases Podcast (https://apfed.org/podcast/) apfed.org apfed.org/specialist apfed.org/connections Claire Beveridge, MD Cleveland Clinic (https://my.clevelandclinic.org/) Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Tweetables (Edited): "I have loved the work that we've done [at the Cleveland Clinic]. It's been really nice to center everything on our EoE patients and have nice multidisciplinary care with speech-language pathologists, allergists, dietitians, pulmonologists, and everyone." — Claire Beveridge, MD "It's a little crazy to think that it's only in the last few years that we have had FDA-approved medications for [EoE], and that we have been jerry-rigging asthma medications to treat our patients." — Claire Beveridge, MD "On the whole, dysphagia means issues with swallowing. … It's a feeling of something getting stuck or something slowly moving down. There are also subtle symptoms that can happen." — Claire Beveridge, MD "The goal of a dilation is to get a disruption because there's scar tissue we want to break open." — Claire Beveridge, MD "I am looking at the breath metabolome. If we breathe into a bag and take a look at all the volatile organic compounds that are in our breath, can we find a signature related to EoE?" — Claire Beveridge, MD Guest Bio: Claire Beveridge, MD, is a Staff Member in the Department of Gastroenterology and Hepatology and heads the Eosinophilic Esophagitis (EoE) adult clinic as well as the transition pediatric to adult EoE clinic. Dr. Beveridge's specialty interests include: EoE, Achalasia, Barrett's esophagus, GERD, esophageal swallowing disorders, and esophageal motility disorders.

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