Live from EOS Connection 2024, Ryan Piansky and Mary Jo Strobel

Real Talk: Eosinophilic Diseases

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, have a conversation about EOS Connection 2024, live at the conference.

In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder’s Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading. Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024. Listen in for more information about the EOS Connection 2024 conference.

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:

[:50] Ryan Piansky introduces the episode. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED’s annual patient education conference.

[1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder’s Award. It was a joy for Mary Jo to present the award to Ryan.

[1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They’ve known Beth for just as long. It was perfect.

[2:23] Ryan’s highlights of this year’s conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers.

[3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference.

[3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE?

[3:57] Ryan also says it’s interesting to hear. APFED doesn’t want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else.

[4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they’ve lived with symptoms for years, not knowing what it was, and now have a diagnosis.

[4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis).

[5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects.

[5:59] Mary Jo found Friday’s conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment.

[6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test.

[6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference.

[6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be.

[6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow.

[7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites.

[7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game.

[8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers.

[8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it’s not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, “Wow, you’re just like me!”

[8:46] For Ryan, it’s amazing that the conference can offer that environment for everybody. Ryan says it’s wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them.

[9:13] Many incredible volunteers came to help; Ryan mentions some by name. It’s wonderful that the conferences have been able to create such a tight-knit community for these patients.

[9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well.

[9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline’s advice that you may not be able to change the situation but you can change how you react to it. It’s important for children to learn and adults to remember; you are not your disease.

[10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you’re a kid first and then you also have to deal with allergies, medicines, and doctors’ appointments.

[10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity.

[10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness.

[10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability.

[11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation.

[11:47] You can find the new EGPA Toolkit at APFED.org.

[11:59] Ryan thinks it’s exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis.

[12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year.

[12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research.

[12:37] Mary Jo answers that’s why we call it EOS Connection! Ryan agrees; we’re making those patient connections even among these rare subsets.

[12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well. [12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit APFED.org/conference and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024.

[13:21] Ryan thanks our education partners for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event.

Mentioned in This Episode:

EOS Connection 2024 Conference

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/egids

apfed.org/specialist

apfed.org/connections

Tweetables:

“It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities.” — Ryan Piansky

“It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.” — Mary Jo Strobel

“We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org.” — Mary Jo Strobel

“It’s exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we’re able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.” — Ryan Piansky