{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Live from EOS Connection 2024, Ryan Piansky and Mary Jo Strobel","description":"Description: Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED\u2019s 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\u2019s 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\u2019s 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\u2019s 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\u2019ve known Beth for just as long. It was perfect.   [2:23] Ryan\u2019s highlights of this year\u2019s 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\u2019s interesting to hear. APFED doesn\u2019t 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\u2019ve 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\u2019s 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\u2019s not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, \u201cWow, you\u2019re just like me!\u201d   [8:46] For Ryan, it\u2019s amazing that the conference can offer that environment for everybody. Ryan says it\u2019s 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\u2019s 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\u2019s advice that you may not be able to change the situation but you can change how you react to it. It\u2019s 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\u2019re a kid first and then you also have to deal with allergies, medicines, and doctors\u2019 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\u2019s 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\u2019s why we call it EOS Connection! Ryan agrees; we\u2019re 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:   \u201cIt 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.\u201d \u2014 Ryan Piansky   \u201cIt was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.\u201d \u2014 Mary Jo Strobel   \u201cWe 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.\u201d \u2014 Mary Jo Strobel   \u201cIt\u2019s exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we\u2019re able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.\u201d \u2014 Ryan Piansky ","author_name":"Real Talk: Eosinophilic Diseases","author_url":"http:\/\/eosinophil.libsyn.com\/website","html":"