Podcast

Real Talk: Eosinophilic diseases

Conversations about living with eosinophil-associated diseases

 

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.

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Episode 007: Research Advances in Identifying EoE-causal Foods

Featured guest: David Hill MD, PhD

Podcast episode 007Recent findings from research co-funded by APFED and the American Academy of Allergy, Asthma & Immunology could have a major impact on food allergy testing for people with eosinophilic esophagitis (EoE). In this episode, co-hosts Dawn McCoy and Ryan Piansky discuss the research that could better identify food triggers that cause EoE symptoms with the principal investor of the study, David Hill, MD, PhD.

Dr. Hill is an Assistant Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and an Attending Physician in the Division of Allergy and Immunology at the Children’s Hospital of Philadelphia (CHOP). In addition to being a practicing allergist, Dr. Hill runs a basic and translational research laboratory that studies the role of the immune system in allergy and obesity, with a particular focus on eosinophilic esophagitis (EoE). He is the author of more than 50 research articles and abstracts, is on the Editorial Board of BMC Pediatrics, and has been the recipient of several awards including the Young Faculty Award from the American College of Allergy, Asthma, and Immunology and the Young Physician-Scientist Award from the American Society for Clinical Investigation.

In this episode, Dr. Hill shares more about his interest in studying EoE, and how he became involved in research related to food triggers and EoE. He explains how the new tests he and his team have created compare to traditional food allergy tests, and why the new tests are much more effective at identifying EoE food triggers. Dr. Hill also sheds light on the impact these tests could have on clinical management of EoE, and the impact they could have on people with EoE. Tune in to find out more.

 

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Episode 006: Understanding and Managing Eosinophilic Granulomatosis with Polyangiitis (EGPA)

Featured guest: Peter A. Merkel, MD, MPH

Understanding and Managing EGPAEosinophilic Granulomatosis with Polyangiitis (EGPA), formerly known as Churg-Strauss Syndrome, is a rare condition that can be challenging to diagnose. In this episode, co-hosts Dawn McCoy and Ryan Piansky explore the topic of EGPA and how it can be managed with expert Peter A. Merkel, MD, MPH.

Dr. Merkel is the Chief of Rheumatology and a Professor of Medicine and Epidemiology at the University of Pennsylvania. Dr. Merkel is an internationally recognized research and clinical expert in vasculitis and scleroderma and is an author of over 350 scientific publications. He is the Principal Investigator of the NIH-Sponsored Vasculitis Clinical Research Consortium (VCRC), a leading international research infrastructure for vasculitis clinical investigation. Dr. Merkel’s research focuses on clinical trial design and conduct, outcome measure development, clinical epidemiology, genetic epidemiology, and biomarker discovery.

In this episode, Dr. Merkel shares information about what EGPA is, and why diagnosing it can be a challenge. A rare disease that mimics other conditions, EGPA is often misdiagnosed and confused with other similar conditions. Dr. Merkel explains the key identifying features of EGPA, current treatment options, and how patients can manage their symptoms by working closely with their healthcare team. He also talks about research advances in this area, and how patients can help in the understanding, treatment, and management of EGPA. Tune in to find out more.

 

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Episode 005: Understanding and Managing Eosinophilic Asthma

Featured guest: Ravi Viswanathan, MD

Podcast episode 005 - Understanding and managing eosinophilic asthmaThere has been a growing awareness of eosinophilic asthma in recent years, and there are increasingly more treatment options for people with this type of asthma. In this episode, co-hosts Ryan Piansky and Mary Jo Strobel explore the topic of eosinophilic asthma, triggers, treatment options, and more with Ravi Viswanathan, MD.

Dr. Viswanathan is a board-certified Allergist & Immunologist, and Assistant Professor in the Section of Allergy, Pulmonary & Critical Care at the University of Wisconsin School of Medicine & Public Health, as well as the Medical Director of the Allergy Clinic. His research and clinical interests include severe asthma, mast cell disorders, and drug allergy. Dr. Viswanathan has authored and co-authored multiple publications and book chapters, including the chapter on “Management of Asthma in Adolescents and Adults” in Middleton’s Allergy Textbook. He is also involved with teaching at the University of Wisconsin School of Medicine for topics on asthma, drug allergy, and muscle disorders.

In this episode, Dr. Viswanathan shares more about the different types of asthma, and the differences between them. He explains more about the diagnostic journey for a person with eosinophilic asthma, the different triggers that may exacerbate symptoms, and treatment options available to patients. Dr. Viswanathan also sheds light on research being conducted in this area, and how patients may better manage their asthma by working closely with their healthcare team. Tune in to find out more about eosinophilic asthma and how people with this condition can achieve better outcomes and improve their quality of life.

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Episode 004: EGID Elimination Diets: Creative Strategies to Make Mealtimes More Engaging

Featured guest: Holly Knotowicz, MS, CCC-SLP

Real Talk: Eosinophilic diseases episode 004 featuring Holly KnotowiczThere is no denying that mealtime can be a challenge for those with eosinophilic gastrointestinal diseases (EGIDs) who are on elimination diets. In this episode, co-hosts Dawn McCoy and Ryan Piansky discuss some creative strategies that can help make mealtimes easier with Holly Knotowicz, MS, CCC-SLP.

Holly Knotowicz is a Speech-Language Pathologist and a Feeding and Swallowing Specialist. Her background is in Communication Sciences and Disorders, and her areas of clinical interest include behavioral, oral motor, and oral sensory feeding disorders, including mealtime dynamics. Holly specializes in working with children who have eosinophilic gastrointestinal diseases (EGID), including eosinophilic esophagitis (EoE), and working with children who have food allergies, FPIES, and neurogenic disorders. She is an active participant in research, has been published in Gastroenterology Journal, and is an international speaker on feeding.

In this episode, Holly shares a little about her own journey with EoE, how that influenced her to dedicate herself to this field, as well as how feeding therapists can help care for those with these conditions. Holly draws on her years of experience to share tips, strategies, and creative coping mechanisms to improve people’s experiences with food, as well as how to navigate the social norms around food and eating. Tune in to find out more about how a feeding therapist can become an invaluable part of a healthcare team for someone with an EGID, such as EoE.

 

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Episode 003: Self-Advocating With an Eosinophil-Disease

Featured guest: Debbie Alves, Patient Advocate

Podcast episode 003 - Self-advocating with an eosinophil diseaseHypereosinophilic Syndromes (HES) are a rare, chronic group of diseases and there are many unanswered questions as to the cause and prevention. Living with HES can be challenging, and in this episode, Debbie Alves shares insights about what it is like to live with HES, her road to getting diagnosed and treated, and what she has learned from her journey that could help others.

Debbie Alves has a number of medical conditions including asthma and HES. She managed her asthma well into adulthood and continued her demanding career as an economist despite worsening symptoms and complications. After a lengthy journey to her HES diagnosis, her symptoms are now under control.

Debbie outlines her long journey within healthcare system, and her various experiences interacting with doctors, specialists, and a diverse team of healthcare professionals with regard to her care. She shares her thoughts on the importance of communication between providers, creating a care team, and becoming an active participant in one’s own health care. Although this is a story of one person’s experience with a specific rare disease, Debbie’s journey is relatable to patients who are searching for a diagnosis and working with more than one provider. Tune in to find out more.

*Content Warning: This episode includes discussion about depression. Listeners are urged to seek professional help if they struggle with these feelings. 

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Episode 002: The Impact of Chronic Illness on Relationships

Featured guest: Barbara Kivowitz, Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other

Podcast episode 002: The impact of chronic illness of relationshipsLiving with a chronic illness can take a toll not just on the patient, but also on their partner, and their relationship. Whether it is a relationship between a couple, a parent and a child, family members, or even friends, living with chronic illness significantly changes the dynamic. In this episode, Barbara Kivowitz, MSW, shares insights about what these changes are, and how to cope with them.

Barbara is a clinician, consultant, and author specializing in healthcare innovation with the goal of helping organizations shift to more relationship-based models of care. She is an advocate for the inclusion of the voices of patients and families in all aspects of health care delivery, research, education, and advocacy. Barbara has also co-authoredLove in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, a guide to help patient-caregiver partners and their clinicians navigate living with chronic illness.

Barbara shares more about her own experience with chronic illness which inspired her to write the book, as well as some of the common challenges that patients and their partners face in living with chronic illness. She describes the impact of these challenges on relationships, and how best to resolve these issues. Barbara also has some inspiring wisdom about creating hope, and why that is so important. Tune in to find out more.

*Content Warning: This episode contains references to topics that may be upsetting or disturbing for some listeners such as depression and suicidal thoughts. Listeners are urged to seek professional help if they have these thoughts or feelings. Resources can be found at the links below.

 

 

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>li>Resources for Coping with Chronic Illness by APFED

 


 

Episode 001: Engaging in research

Featured guest: Evan Dellon, MD, MPH, University of North Carolina Chapel Hill School of Medicine

In recent years, there has been a greater focus on infusing the patient voice in clinical research in the space of eosinophilic disorders. In this episode, co-hosts Dawn McCoy and Ryan Piansky discuss the shift toward patient-led research for eosinophilic diseases with Evan Dellon, MD, MPH.

Dr. Dellon is an adult gastroenterologist with a clinical focus on eosinophilic gastrointestinal diseases (EGIDs) at the University of North Carolina at Chapel Hill. He also serves as a member of APFED’s Health Sciences Advisory Council. Dr. Dellon’s main research interests are the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of EoE, as well as similar investigations into the other EGIDs. He is widely published in this area, and collaborates with investigators all over the world.

Dr. Dellon highlights some of the different types of research in this field, the important role that patients play beyond just participating in clinical trials, and how patient engagement in research has evolved through the years. He also shares more about some of the trends in this area, and what we can expect in the future when it comes to patient involvement in clinical research. Tune in to find out more.

 

 

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Education Partners

APFED’s podcast is made possible thanks to the support of our education partners.

 

 

Bristol Myers Squibb

 

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Sanofi Genzyme Regeneron

Disclaimer

The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their doctors. 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 are their own.