Growing Up with EGIDs with Kayla Abramowitz
Real Talk: Eosinophilic Diseases
Release Date: 04/26/2022
The Spoon Theory and Eosinophilic Disorders
Real Talk: Eosinophilic Diseases
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. Disclaimer: The information provided in this podcast is designed to...
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Gastro Girl and GI Diseases: Conversation With Jacqueline Gaulin
Real Talk: Eosinophilic Diseases
Description: 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...
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The Family Risk of Eosinophilic Gastrointestinal Diseases
Real Talk: Eosinophilic Diseases
Description: 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...
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Remodeling and Eosinophilic Esophagitis (EoE)
Real Talk: Eosinophilic Diseases
Description: 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...
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Journey to an Eosinophilic Esophagitis (EoE) Diagnosis
Real Talk: Eosinophilic Diseases
Description: 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 Hollyinterview Moises...
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Community Perspective: Eosinophilic Gastritis (EoG)
Real Talk: Eosinophilic Diseases
Description: 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,...
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Community Perspective: Eosinophilic Esophagitis
Real Talk: Eosinophilic Diseases
Description: 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...
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Esophageal String Test: Monitoring Tool Use and Development
Real Talk: Eosinophilic Diseases
Description: 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, are 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...
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Live from APFED’s EOS Connection 2023
Real Talk: Eosinophilic Diseases
Description: 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...
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Proton Pump Inhibitors and EoE
Real Talk: Eosinophilic Diseases
Description: 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...
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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.
Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.
Key Takeaways:
[1:10] Mary Jo introduces the guest for this episode, Kayla Abramowitz.
[2:06] Kayla shares her background about her journey with an EGID.
[3:28] How did Kayla juggle school responsibilities alongside going to doctors’ appointments and trying to get a diagnosis for her condition?
[4:33] What are some common misconceptions that people might have about eosinophilic colitis?
[5:38] Kayla has a sibling with an eosinophilic disorder as well. What has that been like?
[6:56] Kayla’s brother’s diagnosis helped guide her toward exploring eosinophilic disease as a possibility to explain her condition.
[7:30] Kayla shares how she and her brother were able to help each other in their journey living with eosinophilic disorders.
[10:10] Kayla explains what some of the day-to-day management of her condition looks like and how she’s trying to manage it in different ways.
[12:10] How did Kayla initially get connected with the APFED community?
[14:37] How is Kayla’s chronic disorder impacting her time at college and her ability to participate in social events?
[16:43] How much did Kayla have to prepare to go away to college?
[18:09] Kayla shares more about her college experience and how studying public advocacy is helping her speak up about topics that are important to her.
[18:31] How does Kayla explain her condition to new friends at college?
[20:40] Kayla’s experiences with her chronic health condition inspired her to establish Kayla Cares for Kids. She explains more about this nonprofit that she started.
[23:37] What are some of the donations that Kayla's nonprofit receives and distributes?
[26:05] What are some preparations that Kayla makes to travel?
[26:56] Kayla talks about some of the recognition she has received for the work that she does.
[28:13] Find out more about Kayla and the work she does via her website or reach out to her via email.
[29:36] Kayla shares some advice for kids growing up with chronic illness.
Mentioned in This Episode:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Kayla Abramowitz, Kayla Cares 4 Kids
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.
Tweetables:
“It’s really hard to explain that I’m not feeling well even though I look fine.” — Kayla
“It made me realize how lonely he was feeling and how much support you can get by going to a conference like that.” — Kayla
“Community is so important.” — Mary Jo
“It’s do or don’t with this medical issue and I have to really evaluate everything on a daily basis.” — Kayla