Community Perspective: Eosinophilic Duodenitis and National Eosinophil Awareness Week

Real Talk: Eosinophilic Diseases

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Jess Seidel, a patient advocate impacted by eosinophilic duodenitis. In this episode, Ryan and Holly discuss with Jess her diagnosis and experience with EoD, formerly known as eosinophilic gastroenteritis (EGE), some of the other health issues she experienced, and what her family’s support means to her. Ryan and Jess discuss visiting Washington, D.C., as young patients, on a trip to encourage U.S. legislators to support legislation related to medical formula coverage and the establishment of National Eosinophil Awareness Week so more people would have awareness of and access to the care they need. They all discuss the effects that National Eosinophil Awareness Week has had on access to diagnosis and care.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists 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:

[0:50] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic, eosinophilic duodenitis, or EoD (formerly referred to as eosinophilic gastroenteritis or EGE), and National Eosinophil Awareness Week.

[1:27] Holly introduces Jess Seidel, a patient advocate impacted by EoD.

[1:41] EoD is a condition that affects the digestive tract, caused by an increase of a type of white blood cell called eosinophils that causes inflammation. Jess was diagnosed with EoD when she was two years old.

[2:30] Jess also had eosinophilic esophagitis and issues in the stomach, as well as the intestines. Her primary treatment was stopping food by mouth and using a feeding tube when she was seven years old.

[3:11] Jess has early memories of hospital stays and doctor visits. An early memory that sticks out is trying to drink formula for lunch at school before getting a feeding tube. She notes that everyone was nice to her and curious about her drink. They asked her questions.

[4:39] Jess’s younger brother was diagnosed with EoD when he was about seven years old.

[4:48] Ryan’s older sister does not have an eosinophilic disorder. He speaks of how supportive she has always been of him and his needs.

[5:28] Fortunately, Jess’s brother did not have the same intensity of issues as Jess. He didn’t need a feeding tube and his disease is under control at the moment. But there is something to be said for having somebody who just “gets it.” You don’t have to explain to them where you’re coming from. They just understand what you’re going through.

[6:08] Ryan appreciates the annual APFED conference and hanging around people his age who have had similar experiences.

[6:27] Holly is kind of jealous as she had an older brother who didn’t get it at all. He’s trying hard but he still struggles with it. He’s reading articles and learning more about why they have to pick certain restaurants. Holly enjoys working with people who have eosinophilic diseases. It’s therapeutic for her.

[7:05] Jess is studying film and video production in college. Media has always been an escape for her. It allowed her to experience something different from what was going on in her life. But she always felt underrepresented in the media she consumed. She never saw well-rounded characters experiencing anything that she had.

[8:14] When she got back into college and screenwriting and directing, she saw an opportunity not only to create more opportunities for escapism but also to champion more disability and chronic illness representation, both on the screen and behind the camera.

[8:52] Holly and Ryan love that Jess is working advocacy into her studies and career path. Holly recently saw a medical drama that had a patient with a food impaction and she felt very seen. Patient advocacy is a huge part of APFED.

[9:22] Ryan and Jess met at APFED conferences when Ryan was four or five but Ryan’s first memory of Jess was in 2007 in Washington, D.C. They had G-tubes and backpacks with pumps. They talked to legislators asking for help with formula coverage and the establishment of National Eosinophil Awareness Week.

[10:43] Jess remembers the feeling of being in Washington, D.C. At age 11, she felt the gravity of the situation: how important it was that these legislators were listening and how important it was to get them to understand and pass medical formula coverage legislation so people could get the help they needed. It meant a lot to Jess.

[11:40] Ryan was seven at the time. He was impressed by Jess as an older patient who clearly understood what they were doing in Washington, D.C. It was an inspiration to him, seeing someone who had these shared experiences with him, going out of the way to make sure more people could understand what patients are going through.

[12:25] Jess points out that it’s such a rare disorder and at the time almost nobody knew anything about it. National Eosinophil Awareness Week allows us to put it in the forefront for a week and help amplify the voices of everybody that’s affected by it, from the patients to the families to the doctors working hard to try to treat it.

[13:06] Jess has seen a huge uptick in awareness about eosinophilic disorders. When Jess got diagnosed at two, nobody knew what it was. She had to go to a specialist at a children’s hospital an hour from home to get the diagnosis. They went through doctors who told her parents they were overreacting or not being good parents by not making her eat.

[13:39] The doctors didn’t know about eosinophilic disorders. There are more resources available now and it’s easier for people to access them. Jess started working with APFED at the beginning of its existence. Now, with a diagnosis, you can go to the internet and find great resources.

[14:29] Ryan was diagnosed with EoE in 2002 when he was two. At first, the doctors said he was throwing up for attention. Today, the awareness of eosinophilic disorders like EoE has spread so much. We’re in a better place these days.

[15:07] Holly’s journey was different, being diagnosed when older. Growing up, she and her mom were told they were crazy, or she was bulimic. Holly loves that there is now a dedicated week for eosinophil awareness. Patients can feel they have a community and be supported.

[15:41] Jess’s condition varies from day to day or even hour to hour, affecting how she might be feeling. She can have great days and then days when she cannot function. She doesn't know what kind of day she’s going to have until she wakes. On a bad day, she’ll do what she needs to do to take care of herself and be kind to herself.

[15:56] Since 2007, APFED has celebrated National Eosinophil Awareness Week during the third week of May. Resources for 2023 National Eosinophil Awareness Week, May 14th‒20th, may be found at apfed.org/NEAW. APFED currently has an awareness campaign running in New York, in Times Square, with a billboard raising awareness for eosinophilic esophagitis.

[19:10] Jess thanks Ryan and Holly for having her on the Real Talk — Eosinophilic Diseases podcast. Jess says, if you’re dealing with an eosinophilic disorder, find a community to have people in your life who understand and support you. It is absolutely invaluable to have a support system and to know that you are not alone. Reach out.

[20:02] Ryan and Holly thank Jess for taking the time to be on the podcast. Ryan shares resources including apfed.org, apfed.org/connections, and apfed.org/NEAW. It’s all about raising awareness and finding a community of support. Holly thanks the education partners linked below.

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

National Eosinophil Awareness Week 2023

apfed.org/connections

Real Talk: Eosinophilic Diseases Podcast

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.