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

Real Talk: Eosinophilic diseases episode 004 featuring Holly KnotowiczFeatured guest: Holly Knotowicz, MS, CCC-SLP

There 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

Podcast episode 003 - Self-advocating with an eosinophil diseaseFeatured guest: Debbie Alves, Patient Advocate

Hypereosinophilic 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

Podcast episode 002: The impact of chronic illness of relationshipsFeatured guest: Barbara Kivowitz, Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other

Living 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-authored Love 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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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

 

GSK

 

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.