Podcast

Featured guest: Dan Atkins

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 Dr. Dan Atkins about Children’s Hospital Colorado’s multidisciplinary treatment program for eosinophilic gastrointestinal disorders (EGIDs).

In this episode, Ryan and Holly interview their friend, Dr. Dan Atkins. Ryan was a long-time patient of Dr. Atkins and Holly worked as a feeding specialist with Dr. Atkins at Children’s Hospital Colorado. Together, Dr. Atkins and Dr. Glen Furuta developed the Gastrointestinal Eosinophilic Disease Program at Children’s Hospital Colorado as a multidisciplinary treatment center for pediatric patients impacted by eosinophilic gastrointestinal diseases. They discuss how treatments and medicines have developed over the years. The clinic started with local patients but now also receives referrals from around the United States. Listen in for tips on identifying EGIDs and using multidisciplinary treatment.

Mentioned in this episode:

• Dr. Dan Atkins, pediatric allergist
• Children’s Hospital Colorado
• National Institutes of Health
• National Jewish Health
• Allergy: Principles and Practice, by Elliott Middleton Jr., Charles E. Reed, Elliot F. Ellis, N. Franklin Adkinson Jr., John W. Yunginger, and William W. Busse

 

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

Featured guest: Kate Goncalves

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED’s Executive Director, interview Kate Goncalves about her diagnosis and treatment journey with EoE.

In this episode, Ryan and Mary Jo discuss with Kate Goncalves how she lived with her symptoms for years before finally bringing them to the attention of her primary care physician at age 16, and how she was connected with a gastroenterologist and diagnosed with EoE. Kate discusses her transition from pediatric to adult care, and how she and her care team prepared for her to travel to go to college. They talk about her treatment plan of eliminating milk and using medications, and how it is a challenge to navigate EoE during the long days on her college campus. Kate also talks about the EoE research project she is working on as part of her pre-med studies, and shares advice for people living with EoE and going away to college.

Mentioned in this episode:

• APFED College Scholarship
• Abbott
• EleCare Elemental Formula
• MyChart

 

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

Featured guest: Priya Bansal, MPH, PhD

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 Dr. Priya Bansal about an allergist’s role in treating EoE.

In this episode, Ryan and Holly discuss with Dr. Priya Bansal her career in internal medicine, pediatrics, allergies, and immunology. She emphasizes the importance of patient advocacy and encourages parents to not accept the diagnosis that their child is a picky eater when the child is refusing food. Dr. Bansal talks about the process of reaching a diagnosis and EoE treatment options.

Listen to this episode for more information about living with EoE and how an allergist can help.

Mentioned in this episode:

• Priya Bansal, MD
• Northwestern Feinberg School of Medicine
• Rush University Medical Center
• Care Everywhere
• Video: Diagnosing and treating pediatric EoE, ACAAI
• Video: Diagnosing and treating adult EoE, ACAAI
• “One-food versus six-food diet elimination therapy for EoE…”, The Lancet
• APFED EOS Connection Conference 2024

 

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

Featured guest: Elizabeth Jensen, MPH, PhD

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about the latest findings from the EGID Partners Registry.

In this episode, Ryan and Holly discuss with Dr. Elizabeth Jensen two studies drawn from data obtained by EGID Partners Registry questionnaires. One study focuses on extraintestinal pain experienced by patients living with EoE and other eosinophilic gastrointestinal disorders (EGIDs). The second study considers vitamin and iron deficiencies reported by patients living with EoE and other EGIDs. Dr. Jensen hints at connected research she would like to pursue next.
Listen for more information about extraintestinal pain, vitamin deficiencies, EoE, and EGIDs.

Mentioned in this episode:

• Elizabeth Jensen, PhD
• Wake Forest University School of Medicine
  
• Department of Medicine at the UNC at Chapel Hill
• Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
• EGID Partners Registry
• Digestive Disease Week (DDW)
• “Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases”
• “Frequent Report Of Vitamin Deficiencies And Use Of Supplements And Complementary/Alternative Treatment Approaches In Patients With Eosinophilic Gastrointestinal Diseases” (EGIDPartners Registry)

 

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

Co-hosts: Ryan Pianksy and Mary Jo Strobel

In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder’s Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading.

Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024.

Listen in for more information about the EOS Connection 2024 conference.

Mentioned in this episode:

• EOS Connection 2024 Conference

 

Special thanks to our EOS Connection 2024 Education Partners:

• Collaborating Education Partners: CEGIR, Children’s Hospital of Philadelphia, Mount Sinai Center for Eosinophilic Disorders, UVA Health
• Presenting Education Partners: Sanofi, Regeneron, Takeda
• Platinum Education Partners: AstraZeneca, Ellodi Pharmaceuticals
• Gold Education Partner: Bristol Myers Squibb
• Silver Education Partners: Ajinomoto Cambrooke, EnteroTrack, GSK, Nutricia, PhRMA, Reckitt | Mead Johnson Nutrition
• Hospitality Suite Sponsor: EvoEndo

 

Featured guest: Corey Ketchem, MD, University of Pennsylvania

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about artificial intelligence (AI) and patient education, with guest Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania.

In this episode, Ryan, Holly, and Dr. Ketchem discuss Dr. Ketchem’s interests, and his research into using an AI chatbot to provide patient education on eosinophilic gastrointestinal diseases. He shares, in broad terms, the methodology and conclusion of the research and what current and future research he is pursuing about using artificial intelligence to improve patient education and care.

Listen to this episode to learn about the current limitations and potential future benefits of using AI to help patients.

Mentioned in this episode:

• Corey Ketchem, MD, MS
• Penn Medicine
• Abstract of paper in Clinical Gastroenterology and Hepatology: “Artificial Intelligence Chatbot Shows Multiple Inaccuracies When Responding to Questions About Eosinophilic Esophagitis”
  
• Medscape article about the paper in Clinical Gastroenterology and Hepatology: “ChatGPT Gives Incorrect Answers About Eosinophilic Esophagitis”, by Carolyn Crist

 

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

Featured guest: Nirmala Gonsalves, MD, Northwestern University Feinberg School of Medicine

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about food-induced immediate response in eosinophilic esophagitis (EoE), with guest Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine, and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program.

In this episode, Ryan, Holly, and Dr. Nirmala Gonsalves discuss food-induced immediate response in EoE, recent and ongoing research into FIRE, and advice for providers.

Listen to this episode to learn about food-induced immediate response (FIRE).

Mentioned in this episode:

• Nirmala Gonsalves, MD
• Northwestern Medicine Feinberg School of Medicine
• Ikuo Hirano, MD
• Publication discussed: Food-induced immediate response of the esophagus — A newly identified syndrome in patients with eosinophilic esophagitis
  

 

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

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about the Spoon Theory.

In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives.

Listen to this episode to learn how the Spoon Theory could work for you.

Mentioned in this episode:

• Christine Miserandino
• ButYouDontLookSick.com
  

 

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

Featured guest: Jacqueline Gaulin, Gastro Girl

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Jacqueline Gaulin, the Founder of Gastro Girl, a source of information for people living with various gastrointestinal disorders.

In this episode, Ryan and Holly interview Jacqueline Gaulin about her career, how she started Gastro Girl, its podcast, and the partnership between Gastro Girl, the American College of Gastroenterology, and GI on Demand.

Listen in for more information about this empowering resource for GI patients and their families.

Mentioned in this episode:

• Jacqueline A. Gaulin
• Gastro Girl
• Where Can I Find Resources for Eosinophilic Disorders?
• GI on Demand
• Gastro Girl Channel on YouTube
• The Kindness Cure: How the Science of Compassion Can Heal Your Heart and Your World, by Tara Cousineau

 

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

Featured guest: Kathryn Peterson, MD, University of Utah Health

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Kathryn Peterson, MD, MSCI, a Professor of Gastroenterology at the University of Utah Health.

In this episode, Ryan and Mary Jo interview Dr. Peterson about the family risk of eosinophilic gastrointestinal diseases, discussing the studies she has done, future work she is planning, and other studies of related topics. She shares that she is a parent to a patient living with an eosinophilic disorder. She hints at future research that may lead to easier diagnosis of EGIDs.

Listen in for more information on Dr. Peterson’s work.

Mentioned in this episode:

• Kathryn A. Peterson, MD
• Pubmed.ncbi.nlm.nih.gov/36148824/ (to release February 2024)
• Pubmed.ncbi.nlm.nih.gov/33221551/ (published November 2020)
• University of Utah Health

 

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

Featured guest: Amanda Muir, MD, Children’s Hospital of Philadelphia

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Dr. Amanda Muir, an Assistant Professor of Pediatrics at the Children’s Hospital of Philadelphia.

In this episode, Ryan and Holly interview Dr. Muir about tissue remodeling and eosinophilic esophagitis (EoE). Dr. Muir describes remodeling and stiffening, its effects, and how it relates to treatment and inflammation.

Listen in for information on remodeling and a pediatric study Dr. Muir is planning.

Mentioned in this episode:

• Amanda Muir, MD
• Children’s Hospital of Philadelphia (CHOP)

 

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

Featured guest: Moises Velasquez-Manoff, health and science writer living with eosinophilic esophagitis (EoE)

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, speak with Moises Velasquez-Manoff, a health and science writer living with EoE. He is a contributing writer for the New York Times Magazine. He writes about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics.

In this episode, Ryan and Holly interview Moises Velasquez-Manoff about his New York Times Magazine article and his search for help with his burning esophagus. They discuss his journey living with EoE, how he got diagnosed, and the treatments that help manage his symptoms. Moises speaks of various misdiagnoses he received that didn’t address his issues. After reflux was ruled out by a series of three tests, a biopsy during an endoscopy indicated EoE. Now on treatment, Moises is feeling much better.

Listen in for a powerful story of a decades-long search for help.

Mentioned in this episode:

• NYT Magazine article by Moises Velasquez-Manoff: “The Mystery of My Burning Esophagus”
• Early-life environmental exposures interact with genetic susceptibility variants in pediatric patients with eosinophilic esophagitis

 

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

Featured guest: Jenny Huang, MD, Allergy and Immunology Fellow, Scripps Clinic

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Mary Jo Strobel, APFED’s Executive Director, speak with Dr. Jenny Huang, an allergy and immunology fellow at Scripps Clinic, who has a unique perspective of also living with eosinophilic gastritis (EoG).

In this episode, Ryan and Mary Jo interview Dr. Jenny Huang about various EGIDs, her allergy and immunology fellowship, her EoG diagnosis, and the elimination diet she follows to treat her EoG. Dr. Huang speaks about patients she sees, and how her experience of following an elimination diet gives her passion for helping people and guiding them to a treatment plan that works for their lifestyle. She advises patients to ask their doctors lots of questions and tell all their family and friends about their condition so they can be supportive.

Mentioned in this episode:

• “Becoming the Patient” Commentary Published in Gastroenterology
• Scripps Clinic

 

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

Featured guest: Declan, patient advocate living with EoE

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE, who serves on APFED’s Health Sciences Advisory Council, talk with Declan, a teenager living with eosinophilic esophagitis.

In this episode, Ryan and Holly interview Declan about his EoE diagnosis, his dietary restrictions, how he receives support from his parents and friends, and upcoming milestones such as transitioning clinical care to an adult provider and attending college.

 

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

Featured guest: Robin Shandas, PhD, and Steven Ackerman, PhD

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council, talk with Drs. Robin Shandas and Steven Ackerman, professional scientists who work together at EnteroTrack.

In this episode, Ryan and Holly interview Drs. Shandas and Ackerman about the development of the esophageal string test (EST), or simply the string test. They discuss the initial concept and the work that led to the development of the string test to collect samples from the upper gastrointestinal mucosa. The test involves swallowing a capsule, similar in size to a TicTacⓇ, with a string attached. It began as an overnight test, and today is a one-hour test. During the conversation, the researchers explain the use of the string test as a monitoring device for EoE, not as a diagnostic device. They describe how the test is administered with no endoscope, no anesthesia, no recovery time, and only minor discomfort for some patients. They discuss the age range for using the device (as young as 4) and the advantages it offers over traditional endoscopy and biopsy for frequent monitoring of eosinophilic esophagitis. Finally, they advise patients on how to access the test: Ask your clinician about it!

Mentioned in this episode:

• Dr. Robin Shandas
• Dr. Steven Ackerman
• EnteroTrack, LLC
• Mayo Clinic
• Dr. Glenn Furuta
• The University of Colorado

 

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

Ryan Piansky, a college student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech pathologist living with EoE who specializes in feeding therapy and serves on APFED’s Health Sciences Advisory Council recorded this episode live at APFED’s annual patient education conference in Denver, CO. They shared their experiences with this year’s conference, discussed takeaways from the conference presentations, and offered ways to continue the conversation. Recordings of the conference presentations are available to watch on-demand at apfed.org/conference through December 2023.

Mentioned in this episode:

• Children’s Hospital Colorado
• EOS 2023 Connection Conference
• CEGIR
• APFED Eos Support Webinar Series

 

Special thanks to our EOS Connection 2023 Collaborators and Education Partners: CEGIR, Children’s Hospital Colorado, Sanofi, Regeneron, Abbott, AstraZeneca, Ellodi, Reckitt | Mead Johnson Nutrition, Ajinomoto Cambrooke, Bristol Myers Squibb, EnteroTrack, EvoEndo, GSK, Nutricia, Allakos, and PhRMA.

Featured guest: James Franciosi, MD

Co-host Mary Jo Strobel, APFED’s Executive Director, is joined by co-host Holly Knotowicz, a speech-language pathologist and feeding specialist living with eosinophilic esophagitis (EoE) who serves on APFED’s Health Sciences Advisory Council. They talk with guest Dr. James Franciosi, Chief of the Division of Gastroenterology, Hepatology, and Nutrition at Nemours Children’s Health in Orlando, Florida.

In this episode, Mary Jo Strobel and Holly Knotowicz interview Dr. James Franciosi about his research with proton pump inhibitors, personalized medicine, the different factors that influence the response EoE patients may have to very high dose PPI treatments and other treatments, including dietary eliminations, swallowed oral steroid medications, and for some patients, biologic medications. Dr. Franciosi explains the uses of these various treatments and compares the risks of medical treatments with the risk of untreated EoE. He also describes the potential for advances in treatment choices.

Mentioned in this episode:

• Nemours Children’s Health
• Children’s Hospital of Philadelphia
• Cincinnati Children’s Hospital
• Beth Allen

 

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

Featured guest: Florence Roufosse, MD, PhD

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 and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Florence Roufosse, MD, PhD, Professor of Medicine, Internist and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, and President, International Eosinophil Society.

In this episode, Ryan and Holly discuss with Dr. Roufosse some of the many unmet needs related to eosinophil-associated diseases. The discussion covers diagnosis, treatment, access to multidisciplinary care, research, and awareness. Dr. Roufosse identifies specific questions she sees an urgency to address and discusses clinical trials. Listen in for a better understanding of some of the unmet needs of patients with eosinophil-associated diseases.

Mentioned in this episode:

• CUB-Hôpital Erasme, Brussels
• Episode 18: “Transition of Care from Pediatric to Adult Providers, with Dr. Giresh Hiremath”
• Episode 15: “Access to Specialty Care for Eosinophilic Esophagitis (EoE) with Dr. Emily McGowan”
• “Improving Care in Eosinophil-Associated Diseases: A Charter”
• apfed.org/specialists

 

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

Featured guest: Jess Seidel, a patient advocate impacted by eosinophilic duodenitis

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 and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council, talk with guest Jess Seidel, a patient advocate impacted by eosinophilic duodenitis.

In this episode, Ryan and Holly discuss with Jess her diagnosis and experience with EoD, formerly known as eosinophilic gastroenteritis (EGE), some of the other health issues she experienced, and what her family’s support means to her. Ryan and Jess discuss visiting Washington, D.C., as young patients, on a trip to encourage U.S. legislators to support legislation related to medical formula coverage and the establishment of National Eosinophil Awareness Week so more people would have awareness of and access to the care they need. They all discuss the effects that National Eosinophil Awareness Week has had on access to diagnosis and care.

Mentioned in this episode:

• American Partnership for Eosinophilic Disorders (APFED)
• National Eosinophil Awareness Week
• apfed.org/Connections

 

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

Featured guest: Ashley Spencer, patient advocate living with eosinophilic granulomatosis with polyangiitis

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 and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Ashley Spencer, patient advocate, a young adult from Bristol, PA, living with Eosinophilic Granulomatosis with Polyangiitis (EGPA).

In this episode, Ryan and Holly discuss with Ashley her history with EGPA, how she was diagnosed, and some things you can do to advocate for yourself and others if you are living with EGPA. She explains the chronic nature of the disease and the treatments that help her in the day-to-day management of EGPA.

You will appreciate Ashley’s positive attitude and determination to improve the outcomes of people living with EGPA.

You will enjoy her positive attitude and bravery.

Mentioned in this episode:

• Episode 06: “Understanding and Managing Eosinophilic Granulomatosis with Polyangiitis (EGPA) with Dr. Peter Merkel”
• Peter A. Merkel, MD, MPH
• Children’s Hospital of Philadelphia
• National Jewish Health-Denver
• Churg-Strauss Syndrome
• Mononeuritis multiplex
• The Spoon Theory
• EGPA Facebook Group
• Eosinophilic Disease Group on Facebook
• The Cleveland Clinic
• The Vasculitis Foundation
• Apfed.org/egpa
• Apfed.org/specialists

 

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

Featured guest: Eliana, living with eosinophilic esophagitis

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 and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council, talk with guest Eliana, a child living with EoE, about her experiences with endoscopies and unsedated transnasal endoscopies (TNE).

In this episode, Ryan and Holly discuss with Eliana her history with EoE, her experience with an elemental diet, and the foods she is able to eat. They also discuss her experiences with endoscopies, including TNEs.

You will enjoy her positive attitude and bravery.

Mentioned in this episode:

• Joel Friedlander, DO
• EvoEndo
• Children’s Hospital Colorado
• Apfed.org/eoe
• Apfed.org/specialists
• Apfed.org/connections
• Real Talk: Eosinophilic Diseases Podcast

 

Featured guest: Joel Friedlander, DO

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 and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Joel Friedlander, DO, about the development and use of transnasal endoscopy (TNE), also known as unsedated endoscopy.

Dr. Joel Friedlander is a co-founder of EvoEndo and a pioneer of pediatric transnasal endoscopy. Previously, he was the Gastroenterology lead of the Aerodigestive Program at Children’s Hospital Colorado and a bioethics consultant.

In this episode, Ryan and Holly discuss with Dr. Friedlander the background and history of unsedated endoscopy. Dr. Friedlander talks about the team at Children’s Hospital Colorado who worked with him on the technology and the procedure. Dr. Friedlander first noticed a similar procedure being used by ENT physicians and speech and language pathologists and wanted to use it for pediatric eosinophilic esophagitis patients. He explains the research they did\. Now Dr. Friedlander and some of his colleagues from the multidisciplinary team at Children’s Hospital Colorado have co-founded a company to promote and spread the use of this technology around the country. Listen in for more information about the use of unsedated endoscopy for EoE.

Dr. Joel Friedlander would like to extend special thanks to the individuals and groups who contributed to the advancement of the unsedated transnasal endoscopy for eosinophilic esophagitis. This includes Dr. Jeremy Prager, Dr. Robin Deterding, Dr. Emily DeBoer, the GI and AeroDigestive teams at Children’s Hospital Colorado, APFED, the Bunning Family, the Meister Family, CEGIR, CURED, the Cherry Family, the Friedlander Family, and the Smith Family.

Mentioned in this episode:

• Joel Friedlander, DO
• EvoEndo
• Children’s Hospital Colorado
• Jeremy Prager, MD
• Aerodigestive Program
• Robin Deterding, MD
• Emily DeBoer, MD
• Apfed.org/eoe
• Apfed.org/specialists
• Apfed.org/connections
• Real Talk: Eosinophilic Diseases Podcast

 

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

Featured guest: Girish Hiremath, MD, MPH

Host Ryan Piansky is joined by co-host Mary Jo Strobel, APFED’s Executive Director, to talk with guest, Girish Hiremath, MD, MPH, about the transition of care for people living with eosinophilic disorders from pediatric to adult providers.

Dr. Hiremath is a pediatric gastroenterologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt in Tennessee. His clinical practice focuses on pediatric patients with eosinophilic gastrointestinal disorders and his research concentrates on the epidemiology, diagnosis, and optimal management strategies to advance clinical outcomes in individuals affected by eosinophilic gastrointestinal diseases, in general, and eosinophilic esophagitis, in particular.

In this episode, Ryan and Mary Jo discuss with Dr. Hiremath transition in health care from a pediatric to adult setting, his recently, published research on transition of care, and his interdisciplinary research program at Vanderbilt. Strategies to help facilitate transition and ages to do so, common barriers, and teaching children skills to manage their health are also discussed.

Mentioned in this episode:

• Girish Hiremath, MD, MPH
• Monroe Carell Jr. Children’s Hospital at Vanderbilt
• “Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities” by Girish Hiremath, Adrian Chapa-Rodriguez, David A. Katzka, Jonathan M. Spergel, Benjamin Gold, Albert J. Bredenoord, Evan S. Dellon, Jeannie Huang, and Sandeep K. Gupta
• The National Alliance to Advance Adolescent Health
• Gottransition.org
• American Academy of Pediatrics
• Crohn’s & Colitis Foundation
• Apfed.org/eoe
• Apfed.org/specialists
• Apfed.org/connections
• Real Talk: Eosinophilic Diseases Podcast

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

Featured guest: Laura Gearman, MS, RD, LD, CNSC

Host Holly Knotowicz, a speech-language pathologist who serves on APFED’s Health Sciences Advisory Council, talks with guest Laura Gearman, MS, RD, LD, CNSC about the use of dietary therapy to treat eosinophilic esophagitis (EoE).

Laura is a Registered Dietitian who specializes in pediatric nutrition. She is the Clinical Nutrition Manager and a Pediatric Dietitian at the University of Minnesota Masonic Children’s Hospital. She has contributed to multiple publications regarding pediatric malnutrition and nutrition support. Plus, she is a mom of two, including a six-year-old daughter who has EoE.

In this episode, Holly and Laura discuss working with children with EoE and their families. They explore elimination and elemental diets, and how to help children manage these special diets. They discuss misconceptions about these diets and when it is best to use them in the treatment of EoE.

Mentioned in this episode:

• Laura Gearman, MS, RD, LD, CNSC
• American Academy of Allergy, Asthma, and Immunology
• apfed.org/eoe
• apfed.org/specialists
• apfed.org/connections
• Real Talk: Eosinophilic Diseases Podcast

 

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

Featured guest: Stephanie Ulrich

Stephanie Ulrich is a Nutritional Therapy Practitioner, allergy-friendly recipe developer, and patient advocate, living in Brooklyn, NY. Being diagnosed with eosinophilic esophagitis (EoE) and food allergies as an adult came as a complete surprise to Stephanie and left her feeling overwhelmed with learning how to navigate her new diagnosis. However, her love of food inspired her to experiment in the kitchen, developing nourishing allergy-friendly recipes that she shares on her website, The Open Cookbook. In addition, Stephanie is a health coach at ViuHealth, a virtual care solution designed to help people living with autoimmunity improve their everyday lives through a combination of data science and access to a dedicated clinician-led care team.

In this episode, Ryan and Holly discuss with Stephanie how she navigates life with allergies, asthma, and  EoE. They discuss the impact the conditions have on her life, and her journey to diagnosis and finding her medical care team. This includes a discussion about how she changed careers because of her EoE diagnosis and began a website to share allergy-friendly recipes.

Listen in for advice from Stephanie Ulrich for adults newly diagnosed with EoE.

 

Mentioned in this episode:

• Stephanie Ulrich, NTP
• TheOpenCookbook.com
• The Open Cookbook on Instagram
• Apfed.org/eoe
• Apfed.org/specialists
• Apfed.org/connections
• Real Talk: Eosinophilic Diseases Podcast

 

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

Featured guest: Emily McGowan, MD, PhD

Co-hosts Ryan Piansky and Mary Jo Strobel, APFED’s Executive Director, talk with guest Emily McGowan, MD, PhD, about access to specialty care for eosinophilic esophagitis (EoE).

Emily McGowan MD, PhD, is an Associate Professor in the Division of Allergy & Clinical Immunology at the University of Virginia School of Medicine. Her primary research and clinical interest is food allergy, and her previous research focused on understanding the underlying causes of the increased prevalence of food allergy in the United States. When Dr. McGowan moved to the University of Virginia School of Medicine in 2016, her clinical and research interests shifted toward understanding the epidemiology and treatment options for eosinophilic gastrointestinal diseases (EGIDs). Dr. McGowan is certified by the American Board of Internal Medicine and the American Board of Allergy and Immunology and is an active member of the American Academy of Allergy, Asthma, and Immunology.

In this episode, Ryan and Mary Jo discuss with Dr. McGowan her research and what brought her to study EoE. They discuss papers she wrote on the prevalence of diagnosis in urban and rural areas. They also explore how the question came up of whether EoE is less prevalent in rural and impoverished areas. A comparison of data on the location of gastroenterologists across the United States showed that rural and impoverished areas have the same prevalence of diagnosis among patients who see a gastroenterologist as patients from more urban areas.

Listen in for information about Dr. McGowan’s research on access to care.

Mentioned in this episode:

• Emily McGowan, MD, PhD
• Division of Allergy & Clinical Immunology at the University of Virginia School of Medicine
• Dr. Elizabeth Jensen
• Dr. Amanda Muir
• apfed.org/eoe
• APFED Specialist Finder
• APFED EOS Connections Online Community
• Real Talk: Eosinophilic Diseases Podcast

 

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.

Featured guest: Kara Kliewer, RD, PhD

Co-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:

• Kara Kliewer, RD, PhD
• Cincinnati Children’s Hospital
• Allergy and Immunology, Cincinnati Children’s Hospital
• Nurses’ Health Study
• Dupixent
• Dr. Evan Dellon
• apfed.org/research
• Clinicaltrials.gov
• APFED EOS Connections Online Community
• Real Talk: Eosinophilic Diseases Podcast

 

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.

Featured guest: Nicole Arva, MD, PhD

Co-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:

• Nicole Arva, MD, PhD
• Ann & Robert H. Lurie Children’s Hospital of Chicago®
• Department of Pathology at Northwestern University
• “Genetics of Eosinophilic Colitis Revealed”
• Apfed.org/eoc
• APFED Eos Connections Online Community
• Real Talk: Eosinophilic Diseases Podcast
• APFED Podcast Episode Featuring Holly Knotowicz
• Tetsuo Shoda
• Joshua B Wechsler

 

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.

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:

• Amal Assa’ad, M.D.
• University of Cincinnati
• Cincinnati Children’s Hospital Medical Center
• Food Allergy Research and Education (FARE)
• NIH
• apfed.org/eoe
• APFED Eos Connections Online Community
• APFED Podcast Episode Featuring Dr. Gupta

 

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.

Featured guest: Kayla Abramowitz

Growing 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:

• Kayla Abramowitz, Kayla Cares 4 Kids
• Email Kayla
• Kayla Cares 4 Kids on YouTube
• EOS Connections Online Community

 

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

Featured guest: Ruchi Gupta, MD, MPH

Many 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:

• Dr. Ruchi Gupta
• Food Without Fear, by Dr. Ruchi Gupta
• EOS Connections Online Community

 

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

Featured guest: Scott Winiecki, MD

For 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:

• Dr. Scott Winiecki
• FDA
• FDA Expedited Review Programs
• MedWatch Program
• Call FDA — 1-888-INFO-FDA (1-888-463-6332)
• Clinical trials for eosinophil-associated diseases 
• ClinicalTrials.gov
• EOS Connections Online Community

 

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

Featured guest: Gerald J. Gleich, MD

Eosinophil-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:

• Dr. Gerald Gleich
• 2021 EOS Connection Patient Education Conference
• EOS Connections Online Community

 

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

Featured guest: David Hill MD, PhD

Recent 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:

• Dr. David Hill
• CHOP
• Eosinophilic esophagitis (EoE)
• 2021 EOS Connection Patient Education Conference
• EOS Connections Online Community

 

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

Featured guest: Peter A. Merkel, MD, MPH

Eosinophilic 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:

• Dr. Peter Merkel
• Dr. Peter Merkel at Penn Medicine
• Real Talk: Eosinophilic Diseases “Episode 003: Self-Advocating With an Eosinophil-Disease”
• Vasculitis Foundation
• Vasculitis Clinical Research Consortium (VCRC)
• APFED Resource Page: Eosinophilic Granulomatosis With Polyangiitis
• Eosinophilic Connect Patient Insights Network
• EOS Connections Online Community

 

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

Featured guest: Ravi Viswanathan, MD

There 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:

• Dr. Ravi Viswanathan
• Dr. Ravi Viswanathan at UW Health
• APFED Resources on Eosinophilic Asthma
• EOS Asthma Toolkit
• EOS Connections Online Community
• APFED’s Specialist Finder

 

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

Featured 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.

Mentioned in this episode:

• Email Holly
• Always-Sometimes-Future Foods Resource
• PickyEaters.co
• FeedingMatters.org
• Eosinophilic esophagitis (EoE)
• 2021 EOS Connection Patient Education Conference
• APFED Recipes
• EOS Connections Online Community
• APFED’s Specialist Finder

 

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

Featured 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. 

 

Mentioned in this episode:

• Debbie Alves
• George Washington University Hospital
• National Institutes of Health
• NUCALA
• Fasenra
• Resources about Hypereosinophilic Syndromes by APFED
• Eosinophilic Disorders Support Group and Discussion Community by APFED
• Advocacy with APFED

 

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

Featured 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-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:

• Barbara Kivowitz
• Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other, by Barbara Kivowitz and Roanne Weisman
• Buy the Book: Love in the Time of Chronic Illness — Rare Bird Books
• Resources for Coping with Chronic Illness by APFED

 

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

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:

• Dr. Evan Dellon
• APFED’s Health Sciences Advisory Council
• EGID Partners
• Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
• Patient-Centered Outcomes Research Institute (PCORI)
• Food and Drug Administration (FDA)
• IBD Partners

 

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

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.