Real Talk: Eosinophilic Diseases Podcast Por American Partnership for Eosinophilic Disorders arte de portada

Real Talk: Eosinophilic Diseases

Real Talk: Eosinophilic Diseases

De: American Partnership for Eosinophilic Disorders
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Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.© American Partnership for Eosinophilic Disorders (APFED) Enfermedades Físicas Higiene y Vida Saludable
Episodios
  • Community Perspective: Using School Science Fair Projects to Raise Awareness of EoE

    Community Perspective: Using School Science Fair Projects to Raise Awareness of EoE
    Sep 26 2025
    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. [...
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    32 m
  • Bone Mineral Density in Pediatric Eosinophilic Esophagitis

    Bone Mineral Density in Pediatric Eosinophilic Esophagitis
    Jun 24 2025
    Description: 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 Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine, about bone mineral density in EoE patients. They discuss a paper she co-authored on the subject. 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] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today’s topic, eosinophilic esophagitis (EoE), and bone density. [1:22] Holly introduces today’s guest, Dr. Anna Henderson, a pediatric gastroenterologist at Northern Light Health in Maine. [1:29] During her pediatric and pediatric gastroenterology training at Cincinnati Children’s Hospital, she took a special interest in eosinophilic esophagitis. In 2019, Dr. Henderson received APFED’s NASPGHAN Outstanding EGID Abstract Award. [1:45] Holly, a feeding therapist in Maine, has referred many patients to Dr. Henderson and is excited to have her on the show. [2:29] Dr. Henderson is a wife and mother. She loves to swim and loves the outdoors. She practices general pediatric GI in Bangor, Maine, at a community-based academic center. [2:52] Her patient population is the northern two-thirds of Maine. Dr. Henderson feels it is rewarding to bring her expertise from Cincinnati to a community that may not otherwise have access to specialized care. [3:13] Dr. Henderson’s interest in EoE grew as a GI fellow at Cincinnati Children’s. Her research focused on biomarkers for disease response to dietary therapies and EoE’s relationship to bone health. [3:36] As a fellow, Dr. Henderson rotated through different specialized clinics. She saw there were many unanswered questions about the disease process, areas to improve treatment options, and quality of life for the patients suffering from these diseases. [4:00] Dr. Henderson saw many patients going through endoscopies. She saw the social barriers for patients following strict diets. She saw a huge need in EoE and jumped on it. [4:20] Ryan grew up with EoE. He remembers the struggles of constant scopes, different treatment options, and dietary therapy. Many people struggled to find what was best for them before there was a good approved treatment. [4:38] As part of Ryan’s journey, he learned he has osteoporosis. He was diagnosed at age 18 or 19. His DEXA scan had such a low Z-score that they thought the machine was broken. He was retested. [5:12] Dr. Henderson explains that bone mineral density is a key measure of bone health and strength. Denser bones contain more minerals and are stronger. A low bone mineral density means weaker bones. Weaker bones increase the risk of fracture. [5:36] DEXA scan stands for Dual Energy X-ray Absorptiometry scan. It’s a type of X-ray that takes 10 to 30 minutes. A machine scans over their bones. Typically, we’re most interested in the lumbar spine and hip bones. [5:56] The results are standardized to the patient’s height and weight, with 0 being the average. A negative number means weaker bones than average for that patient’s height and weight. Anything positive means stronger bones for that patient’s height and weight. [6:34] A lot of things can affect a patient’s bone mineral density: genetics, dietary history, calcium and Vitamin D intake, and medications, including steroid use. Prednisone is a big risk factor for bone disease. [7:07] Other risk factors are medical and auto-immune conditions, like celiac disease, and age. Any patient will have their highest bone density in their 20s to 30s. Females typically have lower bone mineral density than males. [7:26] The last factor is lifestyle. Patients who are more active and do weight-bearing exercises will have higher bone mineral density than patients who have more of a sedentary lifestyle. [7:56] Ryan was told his bone mineral density issues were probably a side-effect of the long-term steroids he was on for his EoE. Ryan is now on benralizumab for eosinophilic asthma. He is off steroids. [8:36] Dr. Henderson says the research is needed to find causes of bone mineral density loss besides glucocorticoids. [8:45] EoE patients are on swallowed steroids, fluticasone, budesonide, etc. Other patients are on ...
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    33 m
  • Common Nutritional Deficiencies that Affect Those with Non-EoE EGIDs

    Common Nutritional Deficiencies that Affect Those with Non-EoE EGIDs
    May 30 2025
    Description: 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 Bethany Doerfler, MS, RDN, a clinical research dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine. Ryan and Holly discuss managing nutritional deficiencies in patients with non-EoE EGIDs and a study Bethany worked on. 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] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today’s topic, common nutritional deficiencies that affect those with eosinophilic gastrointestinal diseases that occur in the GI tract lower than the esophagus (non-EoE EGIDs). [1:31] Holly introduces today’s guest, Bethany Doerfler, a clinical research dietician specializing in lifestyle management of digestive diseases, including gastroesophageal reflux disease, motility disorders, and eosinophilic diseases. [1:45] Bethany currently practices as part of a multi-disciplinary team in a digestive health institute at Northwestern Medicine. [2:03] Bethany began working with this disorder almost 20 years ago. She worked with Dr. Gonsalves and Dr. Hirano at Northwestern. Dr. Gonsalves invited her to work with EoE patients. Bethany had not heard of EoE. [2:59] Bethany says the lens that we’ve used to look at food as the trigger and also a therapeutic agent in the esophagus, we’re looking at in non-EoE EGIDs as well; at the same time, trying to make sure that we’re honoring the other parts of our patient’s lives. [3:27] Before Bethany started working in GI at Northwestern, she worked in the Wellness Institute, doing nutrition for patients at Northwestern. Bethany has a research background in epidemiology and she wanted to see better nutrition research in GI. [3:56] Through a friend, Bethany connected with the Chief of GI at that point. Northwestern had never had a dietician working in GI. [4:08] Bethany is pleased to see a trend in healthcare of thinking about the patient as a whole person, including diet, psychological wellness, physical health, exercise, sleep, and more. Bethany wanted to see more research on GI disorders. [4:38] Bethany says that eosinophils in the esophagus indicate that something is irritating the tissues, such as reflux, food triggers, aeroallergens, and other things. [4:58] Eosinophils do belong in the stomach, the small intestine, and the colon. The challenge for researchers has been, how many, where are they supposed to live, and what are they supposed to look like. [5:10] There is eosinophilic gastritis, where eosinophils can infiltrate the stomach, causing a lot of inflammatory responses that make patients sick. We see that in all parts of the small intestine and less commonly, in the colon, as well. [5:32] It’s a good reminder for listeners that eosinophils are white blood cells. When they’re in the tissues, they can swell things up and cause the body to have this inflammatory response in these lower GI tract organs. [5:49] The symptoms patients can experience are vomiting, diarrhea, and abdominal pain, among other things. [6:14] The nomenclature for this subset of eosinophil-associated diseases has changed and Bethany says to hang tight, there is lots of work underway to nail this down further in the next couple of months to a year. [6:29] The last guidelines were published by a Delphi Consensus in 2022. The experts in the field got together and voted on the scientific accuracy of certain statements to develop cut points for how to grade. [6:48] The experts are asking questions like: What counts as eosinophilic gastritis? What do we think are some of the symptoms and the clinical findings so that we all are looking at things through the same lens? [7:02] To get to these consensus statements, there’s a lot of discussion, agreement, and good collegial discussions about making sure that we’re looking at this accurately. [7:12] We’re trying to give the right names to the right disorders and give clear diagnostic criteria, so that we’re helping our patients get a diagnosis, and we’re not labeling something incorrectly and sticking someone with an inaccurate diagnosis. [7:36] The proper terminology is eosinophilic gastritis in ...
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    41 m
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