Growing Up with EGIDs with Kayla Abramowitz
Real Talk: Eosinophilic Diseases
Release Date: 04/26/2022
Bone Mineral Density in Pediatric Eosinophilic Esophagitis
Real Talk: Eosinophilic Diseases
Description: 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 Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine, about bone mineral density in EoE patients. They discuss a paper she co-authored on the subject. Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship that exists between listeners...
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Common Nutritional Deficiencies that Affect Those with Non-EoE EGIDs
Real Talk: Eosinophilic Diseases
Description: 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 Bethany Doerfler, MS, RDN, a clinical research dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine. Ryan and Holly discuss managing nutritional deficiencies in patients with non-EoE EGIDs and a study Bethany worked on. Disclaimer: The information provided in this podcast is...
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Comparing Pediatric and Adult EoE
Real Talk: Eosinophilic Diseases
Description: 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. Melanie Ruffner, an Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia. Dr. Ruffner describes her work in clinic and the paper she co-authored about pediatric and adult eosinophilic esophagitis (EoE). She covers...
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Full Circle: An Immunologist’s Unexpected EoE Journey
Real Talk: Eosinophilic Diseases
Description: 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. John Accarino, an allergist and immunologist at Massachusetts General Hospital and Mass General for Children, on the topic of immunology support for eosinophilic esophagitis (EoE). Dr. Accarino shares his experiences as a person living with food allergies, allergic asthma, peanut allergy, and eosinophilic...
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The Intersection of Food Allergy and Eosinophilic Esophagitis
Real Talk: Eosinophilic Diseases
Description: 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. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital. Dr. Shreffler is also an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. His research is focused on understanding how...
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Guidelines for Childhood non-EoE EGIDs
Real Talk: Eosinophilic Diseases
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. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children’s Hospital Medical Center. Dr. Collins was a member of the task force that produced the Guidelines on Childhood EGIDs Beyond EoE. In this interview, Dr. Collins discusses the guidelines and how they were...
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Eosinophilic Fasciitis (EF), with Dr. Catherine Sims and Jason Ingraham
Real Talk: Eosinophilic Diseases
Description: 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 Jason Ingraham, an adult living with eosinophilic fasciitis (EF), and Dr. Catherine Sims, a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans’ Affairs Hospital. They discuss Jason’s experiences living with EF and Dr. Sims’s experience treating EF. They share Jason’s...
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The Evolution of Eosinophilic Gastrointestinal Disorders, with Dr. Dan Atkins
Real Talk: Eosinophilic Diseases
Description: 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....
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Navigating Eosinophilic Esophagitis in College with Kate Goncalves
Real Talk: Eosinophilic Diseases
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...
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Treating EoE as an Allergist with Dr. Priya Bansal
Real Talk: Eosinophilic Diseases
Description: 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...
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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