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Real Talk: Eosinophilic Diseases

Real Talk: Eosinophilic Diseases

By: American Partnership for Eosinophilic Disorders
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Summary

 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) Hygiene & Healthy Living Physical Illness & Disease
Episodes
  • Social Vulnerability and EoE

    Social Vulnerability and EoE
    Mar 31 2026
    Co-hosts Ryan Piansky, a 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 Angelica Lackey Mirzoca, MPH, about her research on social vulnerability and EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship 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 this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:13] Holly introduces today's topic — research on social vulnerability and eosinophilic esophagitis (EoE) — and today's guest, Angelica Lackey Mirzoca, a fourth-year medical student at the University of North Carolina School of Medicine in Chapel Hill. [1:38] Angelica will start an internal medicine residency this summer and is planning to do a fellowship in GI and liver disease. Before medical school, she studied public health nutrition at UNC and worked in clinical research in eosinophilic diseases. [1:58] Angelica has been able to use her analytic and public health skills as a member of UNC's EoE Research Group, which is part of the larger Center for Esophageal Diseases and Swallowing, led by Dr. Evan Dellon. [2:15] Ryan sees Dr. Dellon as his GI. Dr. Dellon has been a guest on the Real Talk: Eosinophilic Diseases podcast. Ryan says Dr. Dellon is wonderful, and many in the community look up to him. It's exciting that Angelica is doing research alongside him. [2:38] Dr. Craig Reed, part of the EoE Group, who works closely with Dr. Dellon, invited Angelica to a research meeting. She's always had an interest in digestive tract function and diseases. [2:55] When Angelica was growing up, her father had Barrett's Esophagus. She saw him choking a lot when he was swallowing. It was really scary. [3:04] Angelica says that being in the EoE space and appreciating the impact that problems swallowing have, not only on the patient's everyday life but on the people around the patient, it was important to her to dedicate her skills and time to EoE. [3:37] Angelica researched EoE and social vulnerability. Her abstract at the 2025 Digestive Diseases Week was titled "Increasing Social Vulnerability Impacts Presentation and Decreases Treatment Response in Eosinophilic Esophagitis." [3:58] Angelica explains that social vulnerability is a term to describe the context of people's day-to-day lives and the barriers and obstacles they navigate. [4:07] In this context, their lived experience has a dramatic impact on people's ability to anticipate and recover from different stressors. [4:16] Some groups are notably more vulnerable, including kids, older adults, single-parent households, and people who live with physical and mental disabilities. [4:28] Social vulnerability can be measured qualitatively in terms of socio-economic status and household composition. Other composite scores or variables can serve as quantitative assessments of social vulnerability. [4:50] Ryan says he does research for graduate school associated with climate vulnerability and infrastructure. He has done some work with the CDC's Social Vulnerability Index and the Climate and Environmental Justice Screening Tool. [5:20] Angelica says they used the CDC's Social Vulnerability Index in the study. It's a 16-variable composite score with four overarching themes. It's down to the Census Track level. You can associate it with patient zip codes. [5:37] The SVI can populate into patient charts or a QI database. It was very easy to incorporate into the database. [5:50] The QI database was developed to help people understand what neighborhoods and communities might need additional support in natural disasters. It includes variables that impact people's health day-to-day. [6:18] Angelica says health equity is core to everything she does. Participating in the EoE research, it was important to her to consider the social vulnerability, or people's lived reality, and how it impacts their ability to feel empowered to access care. [6:42] Angelica talks about people not knowing what's wrong with them, choking. Angelica worked in restaurants for 12 years before going to medical school. She listened to a lot of people share their struggles to communicate with the doctors. [7:09] Holly says when she worked at a major children's hospital in an EoE clinic, they had local patient families and patients that flew in from farther away. The local patients got to see her weekly for feeding therapy. ...
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    37 mins
  • Community Conversation: EoE and Life Transitions

    Community Conversation: EoE and Life Transitions
    Feb 26 2026
    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 Jessica Grady, a patient advocate living with EoE. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship 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 this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:13] Holly introduces today's topic — eosinophilic esophagitis and life transitions — and today's guest, Jessica Grady, a patient advocate living with EoE. [1:35] Jessica is a mom who was diagnosed with EoE in her 20s, after years of unexplained symptoms: acid reflux, GERD, food impaction, and anxiety around food. For about six years, Jessica searched for answers while dealing with these issues. [2:00] Since then, Jessica has tried PPIs, steroids, and two clinical trials. She was always interested in the research, so being part of it has been valuable to her. There's a lot of work involved in clinical trials, and it's not easy. [2:29] Jessica is managing her condition and has hit her second endoscopy with remission, with dupilumab. That's exciting, after her long journey. It has taught her the importance of advocating for yourself and staying hopeful with a chronic condition. [3:01] After college, Jessica was going out with friends, and had pain almost like ulcers in her stomach. She thought maybe she was going out too much. [3:20] One day at lunch, water got stuck. Jessica says it was like gargling; it wouldn't go down. Finally, it went down, and she took a bite of food, and that got stuck. That was her first episode. After that, Jessica has had food impactions as her main symptom. [3:54] Jessica says it's quite a reality check when you're choking on water. How is that even possible? Once that happened, Jessica kicked herself into gear and had an endoscopy. [4:12] Food impaction is Jessica's number one symptom. She has been to dinners where it happened, and she calmly excused herself from the table until she could finally get the food to go down. [4:34] As Jessica aged, her food impactions started getting longer. That was terrifying, especially as a Mom needing to take care of her baby. [4:52] Holly shares how she had symptoms from infancy and all the way through her childhood, and it was diagnosed as anxiety, until she started working in an EoE clinic and recognized her symptoms. Getting an EoE diagnosis is often very challenging. [5:40] Jessica went to three different hospitals in her area. She didn't know what kind of doctor to look for. She went to a GI, got an endoscopy, and woke up with a fat lip. The doctor told her not to have caffeine and start on PPIs. [6:11] There was no mention of a biopsy or EoE. She was told she had bad acid reflux and ulcers. [6:35] The PPIs didn't help. She still had acid reflux and impactions. She was still uncomfortable. [6:47] Jessica switched to another healthcare system and got closer to the answer, with more endoscopies and testing, but there was no research with it. [7:02] Finally, Jessica switched to where she is today. There is a doctor and research. They run clinical trials. She gets the latest and greatest updates. She feels like it has helped her get to where she is today. [7:21] Jessica said the doctor knew what to look for. The moment she described her symptoms, the doctor said it would need to be confirmed with a biopsy, but she has EoE. Jessica asked what now? [7:34] Ryan says, we hear a lot of difficulty with diagnosis because not all doctors know what to look for. If they see ulcers or other common symptoms that people with EoE have, they can very easily misdiagnose. It's a tricky diagnosis to make. [8:03] Jessica says that before her EoE diagnosis, doctors told her she had GERD, acid reflux, ulcers, and anxiety around food. They asked what her food choices were and if she was taking too big bites. [8:12] Jessica asked the doctors why she always needs to have a bottle of water with her, and why she feels panic if there's something like a soft pretzel. They told her she was hyperactive and had anxiety. Jessica felt that that was not making sense. [8:40] That is why Jessica feels it is so important to advocate. There's a lot of time involved when you're misdiagnosed. You get your hopes up and have lots of highs and lows. It's exhausting. [8:53] Ryan says that when you do get ...
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    37 mins
  • Tips for Understanding Your Medical Bills

    Tips for Understanding Your Medical Bills
    Jan 22 2026
    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 Beth Morgan, a medical billing advocate and consultant, on navigating your medical bills. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship 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 this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:12] Holly introduces today's topic, Medical Billing, and today's guest, Beth Morgan, a medical billing advocate and consultant. [1:31] Beth says a medical billing consultant is an individual who assists someone with medical bills to make sure that they are accurate and correct, and that they match the medical records, which are notes that the provider makes. [1:48] The medical billing consultant or advocate can make sure the bills are paid correctly and that the charges are within the reasonable prices for the treatment area. [2:19] Beth explains how medical insurance covers healthcare costs. It protects the patients and providers from very high expenses. It can also possibly help with the stress of navigating healthcare systems. [2:36] The goals of medical insurance are to help cover patient costs for treatments, preventive care, and prescriptions. It can also provide resources for telehealth visits or support visits, if needed. [2:48] With a telehealth visit, you, the patient, have to make sure that your insurance plan covers and allows it. Sometimes, the cost of a telehealth visit can be more than if you were to go to the office. [3:27] Beth says most people look at what insurance will cost them per month. They fail to look at their yearly deductible, per person or per family, their prescription costs, or what it will cost to see a specialist. They don't consider what therapies will cost them. [4:08] Beth had a client whose insurance company would only cover in-state providers. If she went out of state, she wouldn't be covered; even an emergency might not be covered. You have to look at the "nitty-gritty" of the policy. [4:32] Beth says the biggest things are the deductible and copay, or co-insurance. Don't just look at the cost. Most people will take out the $10,000 or $5,000 deductible plans, saying it only costs $75 for the entire family. What does it actually cover? [5:00] You don't want sudden surprises when you get to the emergency room. You want to know what your copay will be when you go into an emergency room. [5:11] Holly agrees with Beth and notes that Real Talk listeners have chronic illness. Some have multiple illnesses. When you're selecting insurance plans, those are the things you have to look into. [5:27] Patients with EoE often need endoscopies and other specialized procedures. Holly asks for tips on how someone can know what an endoscopy or other procedure will potentially cost. [5:41] Beth says to ask the doctor what the CPT code is. That's the code that describes the treatment. Then look up that CPT code on the insurance company website. They will show an estimated cost for that treatment, for a rough idea of the cost. [6:10] Keep in mind that it will not tell you what the providers will charge or what the hospital fee will be. [6:21] Holly says she has EoE and MS. She asks a social worker for the CPT code for every procedure so she has a record to double-check when the bill comes. The CPT code is the key. [6:50] Holly is a speech pathologist who does feeding therapy. She says to look at your plan to see if therapy is a copay or if it goes toward your deductible. If it goes toward your deductible, it will be very expensive until you meet that deductible. [7:10] People living with an eosinophilic disorder may find themselves in the ER for a variety of reasons. Holly was there this week with a food impaction. For others, it could be a pain flare or an asthma attack. [7:26] Holly asks how families can be prepared for medical bills related to emergency care. [7:40] Beth replies, You also have on that bill the ER doctor and the ambulance fee, including mileage, which must be accurate or rounded up to the next mile. Track the mileage in your car. [8:43] Who will be transporting you: volunteers from the fire department, a hospital ambulance, or an outside ambulance? Are you going under Basic Life Support or Advanced Life Support? [9:05] Once you get to the ER, have someone else...
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    22 mins
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