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 014: Longitudinal Research Studies and Eosinophilic Disorders

Featured guest: Kara Kliewer, RD, PhD

Podcast episode 014 - Kara Kliewer, RD, PhDCo-hosts Ryan Piansky and Holly Knotowicz, MS, CCC-SLP, talk with guest Kara Kliewer, RD, PhD, about longitudinal research studies.

Dr. Kliewer is a clinical research manager at Cincinnati Children’s Hospital Medical Center in the Division of Allergy and Immunology. She has a doctorate in nutrition and has teamed up with other researchers to manage multi-site clinical trials in eosinophilic disorders, oversee coordinators managing industry-sponsored clinical trials, and collaborate and assist with research projects at the Cincinnati Center for Eosinophilic Disorders. She is also a member of the Consortium of Eosinophilic Gastrointestinal Disease Researchers, also known as CEGIR.

In this episode, Holly and Ryan discuss with Dr. Kliewer her background and experience with research studies for eosinophilic disorders. Dr. Kliewer explains what a longitudinal study is, how long it can last, what kind of data it can gather, and the benefits of this type of research. She shares how easy it is to enroll in a longitudinal study and the time commitment that is often expected from participants. Dr. Kliewer also notes the types of interventional studies she works with and what kinds of commitments are expected of participating patients. She also shares how patients can enroll in longitudinal or cross-sectional studies. Finally, Dr. Kliewer discusses her current work and upcoming research. Listen in to learn the valuable findings longitudinal studies can produce.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.

 


Episode 013: Genetics and Eosinophilic Colitis

Featured guest: Nicole Arva, MD, PhD

Podcast episode 013 genetics of eosinophilic colitisCo-hosts Ryan Piansky and Holly Knotowicz talk with guest Nicole Arva, MD, PhD about genetics and eosinophilic colitis.

Dr. Arva is a pediatric pathologist at Ann & Robert H. Lurie Children’s Hospital of Chicago. She is also an Associate Professor in the Department of Pathology at Northwestern University Feinberg School of Medicine. She has been a part of more than 50 publications, many of which explore eosinophilic diseases, and recently co-authored a manuscript entitled “Genetics of Eosinophilic Colitis Revealed.”

In this episode, Holly and Ryan discuss with Dr. Arva her recent and upcoming research. They cover the purposes of molecular testing and a new molecular study that concludes that EoC is a unique disease, with specific genetic characteristics that set it apart from other EGIDs, Crohn’s disease, and IBD. Dr. Arva explains how that uniqueness was discovered, and what it means for therapeutic options for EoC. Listen in to learn about this innovative research.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.

 


Episode 012: Aeroallergens and EoE

Featured guest: Amal Assa’ad, MD

Host Ryan Piansky and co-host Mary Jo Strobel, talk with guest Dr. Amal Assa’ad about aeroallergens, food allergies, and eosinophilic esophagitis.

Dr. Assa’ad is a pediatric allergist. She is a Professor at the University of Cincinnati in the Department of Pediatrics, as well as the Director of Clinical Services and Associate Director of the Division of Allergy and Immunology at Cincinnati Children’s Hospital Medical Center. She is an accomplished, award-winning researcher who has published more than 100 peer-reviewed manuscripts and book chapters.

In this episode, Mary Jo and Ryan invite Dr. Assa’ad to share her academic path and the research she has done on eosinophilic esophagitis (EoE) as well as current research directions. Dr. Assa’ad discusses how environmental allergens and EoE connected and why treatments for allergies are ineffective at preventing EoE. She also discusses a study on the demographic differences in the diagnosis of EoE and shares her optimism for biological treatments in the pipeline for eosinophilic disorders.

This podcast was recorded prior to the FDA approval of DupixentⓇ for indicated treatment of eosinophilic esophagitis for people aged 12 and older.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.

 


Episode 011: Growing Up with EGIDs

Featured guest: Kayla Abramowitz

APFED Podcast Episode 011Growing up with an eosinophilic gastrointestinal disorder (EGID) can be a challenge. In this episode, host Ryan Piansky, and guest host Mary Jo Strobel, talk to 19-year-old Kayla Abramowitz to discuss her journey living with eosinophilic colitis.

Kayla Abramowitz started having symptoms of an EGID at the age of six but was not diagnosed until many years later. Today, she is a sophomore in college majoring in Public Advocacy at the University of Miami. She is also the Founder, Chief Kid Officer, and Vice Chairperson of the non-profit Kayla Cares 4 Kids. Kayla founded the organization at age 11. Motivated by her own experience with hospital stays due to chronic illness, she collected entertainment and educational items to donate to children’s hospitals. Kayla has received recognition and awards for her work from various organizations.

In this episode, Kayla shares her journey as a child growing up with multiple medical conditions, including eosinophilic colitis, and how she navigates the challenges of living with chronic diseases. She explains her diagnostic journey, how important community support was and continues to be for her, and what inspired her charity work. Tune in to listen to Kayla’s inspiring story and learn more about her motivation to make life better for other children with chronic disease.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, and Mead Johnson Nutrition.

 


Episode 010: Co-morbidity of Eosinophilic Esophagitis (EoE) and Food Allergy

Featured guest: Ruchi Gupta, MD, MPH

Podcast Episode 010: Co-morbidity of Eosinophilic Esophagitis (EoE) and Food AllergyMany patients diagnosed with eosinophilic esophagitis (EoE) are initially diagnosed with food allergies. What is the relationship between food allergies and EoE, and what is the research available on this topic? In this episode, host Ryan Piansky, guest host Mary Jo Strobel, and Dr. Ruchi Gupta discuss the co-morbidity of EoE and food allergies.

Dr. Ruchi Gupta is a Professor of Pediatrics & Medicine at the Northwestern University Feinberg School of Medicine, Clinical Attending at Ann & Robert H. Lurie Children’s Hospital of Chicago, and Director at the Center for Food Allergy & Asthma Research (CFAAR). She is world-renowned for her research on the epidemiology, economic impact, prevention, and management of allergic conditions, and strives to find answers and shape policies surrounding these conditions in order to reduce the burden and improve health equity. As a mother of a child with food allergies, Dr. Gupta also brings a personal perspective to the discussion.

In this episode, Dr. Gupta shares information about food allergies and EoE, the similarities and differences between them, and some of the available treatment options. She also highlights how treatments may differ for food allergies vs EoE, and the cases in which oral immunotherapy can cause or exacerbate EoE. Tune in to find out more about allergic diseases and their relationship to EoE, and to get advice on managing food allergies and EoE.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, and Mead Johnson Nutrition.

 


Episode 009: Drug Development and Approval: A Conversation with the FDA

Featured guest: Scott Winiecki, MD

Podcast episode 009: Drug development and approvalFor many subsets of eosinophilic associated disease, there is not yet an FDA-approved therapy available. There are several therapies in various stages of development for eosinophilic esophagitis, but what exactly are the steps that need to be taken to bring a therapy to market and what is the role of the U.S. Food and Drug Administration (FDA) in medications coming to market? In this episode, host Ryan Piansky, guest host Mary Jo Strobel, and Dr. Scott Winiecki discuss this topic.

Dr. Scott Winiecki is the Director of the Safe Use Initiative at the FDA. He completed his M.D. at the University of Maryland and his pediatric training at the Children’s Hospital of Philadelphia. After 12 years in private pediatric practice, he joined the U.S. Food and Drug Administration in 2011. After working on immune globulin products and vaccines for five years, he joined the Center for Drug Evaluation and Research (CDER) in September 2016. In his current role at the FDA, he is working to reduce preventable harm from medications by collaborating with both public and private groups within the healthcare community.

In this episode, Dr. Winiecki explains the role of the FDA in getting a drug to market. He talks about the different stages a drug has to go through before it reaches the FDA and the phases of clinical trials in assessing a drug’s suitability for public use. Dr. Winiecki gives us an inside look at the intricacies of ensuring the safety and efficacy of a drug, as well as how patients can work with the FDA in terms of drug development. Tune in to find out more.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partner: Bristol Myers Squibb.

 


Episode 008: History of Eosinophils

Featured guest: Gerald J. Gleich, MD

Podcast episode 008 FacebookEosinophil-related diseases are a relatively recent discovery in the medical field, and patient advocacy in this area has an even shorter history. In this episode, host Ryan Piansky, guest host Beth Allen, and world-renowned expert Dr. Gerald Gleich discuss eosinophils, the evolution of patient advocacy, and progress within this field.

Dr. Gerald Gleich is a Professor of Dermatology and Medicine at the University of Utah and has had a lifelong professional commitment to understanding eosinophils. During his tenure, he established a research laboratory for allergic diseases at the Mayo Clinic and Foundation where he was a professor of medicine and immunology. He has contributed to more than 600 scientific articles and is a member of APFED’s Board of Directors.

Co-host Beth Allen is the parent of a child who was diagnosed with eosinophilic gastrointestinal disease at a time when very little information about these conditions were available. She co-founded APFED in 2001 and is now serving as Senior Director of Strategic Sales at EvoEndo, which develops systems that enable unsedated endoscopic procedures.

In this episode, Dr. Gleich shares more about what sparked his interest in researching eosinophils and how he has contributed to various related research studies. He sheds light on his discovery of Gleich syndrome, some of the studies that have contributed to a better understanding of eosinophilic conditions and their treatment, and his hopes for further research in this area. Beth Allen also talks about the history of APFED and patient advocacy in relation to eosinophil-associated diseases, and how patients have contributed to research. Tune in to find out more.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners: GlaxoSmithKline.

 


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.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

 


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.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partner: GlaxoSmithKline.

 


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.

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partner: GlaxoSmithKline.

 


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.

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

 


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. 

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partner: GlaxoSmithKline.

 


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.

 

Mentioned in this episode:

This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

 


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.

 

Mentioned in this episode:

 

This episode is brought to you thanks to the support of our Education Partners: Bristol Myers Squibb, Sanofi Genzyme, and Regeneron Pharmaceuticals.

 


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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.