Community Perspective: Using School Science Fair Projects to Raise Awareness of EoE

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 living with EoE who serves on APFED’s Health Sciences Advisory Council, interview three high school students who made less invasive EoE diagnostics the focus of a science fair project. 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: [:51] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:08] Holly introduces today’s guests, three high school students from Texas who made EoE diagnostics the focus of a science fair project: Leyna, Nhu, and Jaden. [1:47] Leyna, Nhu, and Jaden are best friends. Nhu was diagnosed with EoE last summer. Leyna said Nhu told them it took a long time for the doctors to diagnose her because they thought it could be different conditions. [2:07] Nhu told them about her appointments and her endoscopy procedures. She had to miss school sometimes. Leyna and Jaden were concerned for her. [2:22] Leyna took AP Bio. Her teacher was a sponsor for the science fair. Leyna thought this would be a meaningful project for the three friends to learn more about Nhu’s condition. [2:45] Holly shares that she wasn’t diagnosed until her 20s, but she was sick for much of her childhood. [3:13] Ryan shares that he was diagnosed when he was two, after two years of his parents taking him to different doctors and undergoing different tests. [3:31] Nhu says it was hard to find a specialist. They found one and had to wait six months for an appointment. It was a long time, suffering from the effects of EoE with constant symptoms, a lot of heartburn, and painful vomiting. [4:00] Nhu was diagnosed with EoE in her sophomore year of high school. Her friends have seen her endure a lot, but she’s strong. Nhu had to miss an orchestra concert where she had a big solo, because of her EoE. [4:32] Doctors thought Nhu could have something different, like H. Pylori or cyclic vomiting syndrome. They didn’t have clear answers, which was confusing and frustrating for her family. [4:50] Holly talks about how difficult it was for her to get a diagnosis, and how she was told she was vomiting to get attention. She shared her reaction when diagnosed. She would like someone to do a research study about the pain tolerance of people with EoE. [5:41] Leyna says junior year is the hardest year of high school. She doesn’t know how Nhu survived physics and AP classes with EoE on top of it, and making up late work. [6:14] Nhu takes a weekly injection. Her symptoms happen almost monthly. Sometimes she misses school for two weeks and has to catch up on work. Leyna and Jaden help her with her schoolwork. [6:47] Ryan shared how he missed a third of his senior year in high school. He’s now on an injectable biologic that has helped him a lot. That treatment option wasn’t available when he was in high school. Having supportive friends to send him his schoolwork and keep him up-to-date was very helpful. [7:11] Ryan explains the esophageal string test (EST). This is a tool that was developed to help monitor eosinophilic esophagitis (EoE). The test works by having the patient swallow a capsule about the size of a Tic Tac that has a string attached. [7:25] The capsule dissolves in the stomach while the string stays in place in the esophagus. After about an hour, it’s gently removed. Along the way, the string collects samples from the lining of the esophagus, which are reviewed, similarly to a biopsy. [7:37] Holly adds that what makes the string test unique is that it doesn’t require an endoscope, anesthesia, or recovery time, things that usually come with a traditional endoscopy and biopsy. [7:46] It’s now being used with patients as young as four years old. While some people might feel some minor discomfort, it’s generally much easier for regular monitoring than an endoscopy. [7:57] Holly explains that she was involved in testing the device and developing a swallowing protocol for it at Children’s Hospital of Colorado. We will talk more about this later in the episode. [8:06] Ryan adds, to learn more about the development of the string test, listen to episode 26 of this podcast. [8:10] The string test is one of multiple, less-invasive monitoring tools for eosinophilic esophagitis. Others include the sponge test and unsedated trans-nasal endoscopy. [...