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.

[8:19] To learn more about unsedated transnasal endoscopy, listen to episodes 19 and 20, where we talk to clinicians and patients about this method.

[8:27] During that episode, we talked to the developers of the EST.

[8:38] Jaden tells how he, Leyna, and Nhu brainstormed ideas and decided to base their project specifically on how to diagnose EoE in a less invasive way than endoscopies.

[9:12] Before this project, they were not familiar with the EST. Nhu says her only option for diagnosis was an endoscopy.

[9:21] Holly says it’s still like that in Maine. She came from an area of the country where the EST was researched, and it’s interesting to her that she doesn’t have access to it now.

[9:37] What appealed to the group about the EST as an alternative to endoscopies is that it was so different. There are so many advanced technologies, and the EST is just a capsule taped to a string. It is simple but innovative.

[10:13] Real Talk: Eosinophilic Diseases had Drs. Robin Shandas and Steven Ackerman, who were instrumental in the development of the esophageal string test, as guests on episode 26 of this podcast. Ryan encourages listeners to check out that episode at apfed.org/podcasts.

[10:42] They searched for keywords and analyzed a variety of scholarly literature. They collected a lot of data from Dr. Ackerman’s papers.

[11:10] They also reached out to gastroenterologists on social media. A hard thing about science fair projects is coming up with an experiment. They didn’t know what they could do just with compiled research, but they had a great sponsor who helped along the way.

[11:56] Leyna says they trusted that the doctors they reached out to on social media were competent in their understanding of different diagnostic methods. She notes that different locations may have different resources and different biases.

[12:14] Leyna says they talked to doctors in the U.S. and from different countries, including India and Mexico. She commented that communities in Mexico might not have the same resources as communities in the U.S. or India. That might change their understanding of the EST.

[12:33] We might have different biases because we don’t have the same technology to research and find the same things about the EST.

[13:12] Leyna says they reached out to doctors on social media, but didn’t get responses from that many doctors. Reaching out to patients would be a good thing if they want to continue the project.

[14:00] Jaden says most of the data they found was from Dr. Ackerman, including a survey he did comparing the data of the EST and the biopsies.

[14:10] They found that the EST and the biopsies were relatively similar in terms of discovering the eosinophilic count and determining whether the EoE is active or inactive.

[15:30] They found differences between ESTs and biopsies in finding how much of a certain chemical is in the patient’s cells.

[14:43] Leyna comments that one of the doctors they reached out to told them about the sponge test, another less invasive method. They didn’t research the sponge test, but it sounded interesting.

[15:00] Ryan says there are a lot of cool new techniques that are being researched, like the transnasal endoscopy that goes in through the nose, the string test, and the sponge test.

[15:13] Leyna says the cool thing was hearing about all these methods. They had hypothesized that there are less invasive methods that may be better than endoscopies.

[15:27] They were not able to prove their hypothesis yet. They learned a lot of different things that could be beneficial.

[15:42] Holly points out that the transnasal endoscopy is not scary. It’s also known as the unsedated endoscopy. Holly has done both the EST and the unsedated endoscopy, and they each have pluses and minuses.

[16:15] Nhu explains how the team would meet at one of their houses, usually Leyna’s house. One day, they watched Interstellar together, and the “Eureka moment” scene motivated them.

[16:41] They helped each other whenever necessary. When the project board was due, they all went to Leyna’s house to work on the project board. They worked together as a team.

[16:51] Jaden analyzed a lot of the data. Leyna reached out to professors. Nhu helped Jaden understand some terms. On the day they presented the project, Nhu was sick in the hospital, which made them sad. They included a photo of her on the project board.

[17:28] Holly says that although Nhu wasn’t there, it may have helped people know how sick EoE can make you feel.

[18:28] Leyna says one of the doctors they reached through social media told them that endoscopies have lots of benefits. The biopsy samples give healthcare professionals a clear idea of how many eosinophils per high-powered field, a key indicator in diagnosing EoE.

[18:57] The diagnosis gives a baseline for starting treatment for the patient, monitoring how effective the treatment is. You can’t count the number of eosinophils per high-powered field using the string test.

[19:11] The EST is a gelatin capsule attached to a long string that you swallow. It dissolves in the stomach. It’s less expensive than an endoscopy.

[19:33] Holly says one of the big differences is that you can’t diagnose EoE on a string test. It has to be diagnosed with an endoscopy.

[19:40] Leyna says they learned that from the doctors and medical students who reviewed their project board. You can’t diagnose EoE with the EST, but you can monitor it.

[19:52] The string test doesn’t provide a direct eosinophil count, but it reflects the level of inflammation in your esophagus, and it can measure the protein biomarkers. That correlates with the eosinophil count from a biopsy. It is good for monitoring EoE.

[20:12] Ryan says that’s a great idea. In the show notes, there is a link to the diagnostic consensus guidelines. They specify that you need an endoscopy and 15 eosinophils per high-powered field to be diagnosed with EoE.

[20:28] The EST can monitor the progression of the disorder as you’re trying new medicines or an elimination diet. If you need an endoscopy every three to six months, it can be taxing.

[20:49] Ryan comments on the cost. Going through anesthesia for an endoscopy is very expensive, and not everyone has the insurance to cover these diagnostic procedures. The EST is an option you can do in a doctor’s office in just over an hour.

[21:16] Holly asks if Nhu has participated in a string test. Nhu has not, but she would love to do a string test if she had the chance. Whenever she sees her doctor, she brings up her condition, and what could be better for her, such as the string test.

[22:06] The science fair is a huge regional fair in Houston, called the Science and Engineering Fair of Houston (SEFH). This was their first year participating. They were regional qualifiers from their district. When they got there, everyone else had six-foot-tall printed boards. It was a shock to them.

[22:56] They hope to level up their board for next year’s fair. It was cool and eye-opening to see all these student researchers and get feedback from the people who walked by their booth. They heard some interesting things to use in their next project.

[23:15] One medical student in attendance came by their project board and suggested that while the EST may not diagnose EoE, maybe it could be used as a screening tool [to help identify people who should follow up with a gastroenterologist for a diagnostic work-up]. Interestingly, this was a medical student, and she had recently scheduled an appointment with a gastroenterologist for an endoscopy to see if she has EoE.

[24:04] This student didn’t seem to know much about EoE, but felt she was experiencing symptoms that might indicate EoE. She told them she had learned so much from their board. Ryan says it’s great that the project was able to help this person.

[24:44] Jaden says that the students at their school didn’t know much about EoE, but when they looked at the project board, they were shocked by how incredibly difficult it is to diagnose EoE and how the EST could change a lot of things as a screening method.

[25:11] Jaden says their science teacher came by to see their board and how they were doing. He liked how they included not only the research information but also the stories of why they chose their project and why they were passionate about it.

[25:34] The day of the project, Leyna and Jaden were sad that Nhu couldn’t be there with them. Their sponsor, Leyna’s biology teacher, was sick, but showed up at the fair to view their presentation. They raised awareness about EoE. People learned about it.

[25:54] When Nhu told Leyna about her EoE, Leyna had no idea what it was. She’s glad their project brought the issue to the table. They emphasized that more research needs to be done. There is much we don’t know about less invasive methods.

[26:23] Nhu has considered a career in medicine since she has been in many hospitals and talked to a lot of doctors. Jaden sees himself in the engineering field, but he enjoys researching like this and seeing things through a different perspective.

[27:05] Nhu learned a lot about herself with EoE. Leyna loves how much they learned from this project. She is interested in pursuing scientific research. She thinks it’s cool that Ryan is a graduate student.

[27:24] Leyna just got back from a five-week summer research program. It was insightful. She doesn’t see herself becoming a doctor, but possibly doing research and advocating for different conditions.

[27:43] When Ryan was in high school, with all his hospital time, he had an interest in medicine, then he took a turn into engineering. He enjoys research. He’s passionate about engaging in patient advocacy work through APFED.

[28:10] Ryan is glad for Leyna, Nhu, and Jaden that they were able to engage with this research and do it as a group and as friends. He says it’s fantastic to hear from the group about the whole process they went through.

[28:23] Holly asks, looking back on everything you guys learned and experienced in this project, what’s one question or idea you would still like to explore if you had more time and resources?

[28:38] Nhu wants to research finding more ways to diagnose EoE. Testing for EoE and finding EoE are very interesting for her.

[28:53] Jaden thinks that if they had more time, they would try to create a model of the EST to show how it works. He would possibly try to improve upon the model or develop something new. Instead of just relying on the data we have, he would try to collect data.

[29:26] Leyna agrees. She would like to build a prototype, understand how the capsule works, and find out whether the string down the esophagus is uncomfortable.

[33:41] Ryan suggests there is a doctor who would let them try the string test so they could see how it feels. Holly tried the string test at a major children’s hospital while it was being researched. She doesn’t want to ask her patients to do something she hasn’t done, since she has the diagnosis too.

[30:37] Ryan comments that he enjoyed hearing about the process of the project.

[30:51] Ryan gives a quick recap: The esophageal string test is a tool to help monitor EoE. It is not a tool to diagnose EoE. If you or a loved one has EoE or suspect that you might, ask your clinician about the string test to see if it’s an option for you.

[31:03] Holly adds: School science fairs are one way to bring education about eosinophilic disorders to schools. We love hearing about community science fairs and school projects that teach others about these conditions.

[31:13] For those of you looking to learn more about eosinophilic esophagitis, we encourage you to visit apfed.org/EoE.

[31:23] For those looking to find specialists who treat EoE, we encourage you to use APFED’s Specialist Finder at apfed.org/specialist.

[31:30] Ryan thanks Leyna, Nhu, and Jaden for joining us today. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Dr. Robin Shandas

Dr. Steven Ackerman

“Updated international consensus diagnostic criteria for eosinophilic esophagitis: Proceedings of the AGREE conference”

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

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

Tweetables:

“Nhu and Jaden are my best friends. Recently, Nhu was diagnosed with EoE. I remember her telling us about the long diagnosis process. It took the doctors quite a long time to diagnose her because they thought it could be different conditions.” — Leyna

“I thought that this would be a meaningful project for us to learn more about Nhu’s condition [of EoE].” — Leyna

“The students at our school didn’t know much about EoE, but when they looked at the project board, they were shocked by how incredibly difficult it is to diagnose EoE.” — Jaden

“One of the main benefits of the string test is that endoscopies can be quite expensive, especially the anesthesia. It could be beneficial for people who don’t have the money for an endoscopy.” — Nhu