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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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.
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:
[0:50] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: Eosinophilic Granulomatosis with Polyangiitis (EGPA) Today’s episode features the perspective of a patient living with EGPA.
[1:52] Holly introduces Ashley Spencer, a young adult from Bristol, Pennsylvania, living with EGPA.
[2:03] Ashley thanks Holly and Ryan for having her on the podcast.
[2:19] Ashley says it is not a walk in the park living with EGPA. When Ashley was 16, she started displaying symptoms of EGPA. At the time, because of her age, doctors didn’t associate her symptoms with anything other than severe asthma.
[2:45] Two years later Ashley developed sinus issues that required surgery. Every year she displayed more symptoms.
[3:03] Ashley says EGPA has three stages and early diagnosis can halt its progress.
[3:36] EGPA stands for Eosinophilic Granulomatosis with Polyangiitis. Eosinophils in the body are high, causing inflammation within the body including major organs.
[4:01] Ashley had exercise-induced asthma. She played sports and danced, but all of a sudden, it went from exercise-induced asthma to severe asthma. She was admitted to the hospital for it and needed continuous albuterol treatments. From age 16 until now, Ashley has not been able to get off steroids, which can cause severe issues.
[5:05] Ashley displayed sinusitis issues when she was 18. Within two years, she had four sinus surgeries in all eight of her sinus cavities for sinusitis and nasal polyps.
[5:26] The polyps were starting to show eosinophilia but not enough for a full diagnosis. Because Ashley was moving from adolescence to adulthood, she had to be transitioned from doctors at Children’s Hospital Philadelphia to an adult doctor. Her family doctor told her she was getting worse. He sent her to National Jewish in Denver, Colorado.
[6:12] Ashley checked into National Jewish Health for two weeks. Every day she saw doctors and had testing. Ashley was diagnosed with Churg-Strauss Syndrome, which is now known as Eosinophilic Granulomatosis with Polyangiitis (EGPA).
[7:28] By the time Ashley got the diagnosis, she was in the last stage of EGPA, which is the vasculitic stage.
[8:09] A common misconception about EGPA is that it doesn’t affect children and young adults. Another misconception is that EGPA patients may visually look healthy, similar to many autoimmune disease patients. EGPA affects the internal body.
[9:18] Ashley’s lungs, sinuses, and her nervous system have been impacted. One morning she woke up and she was paralyzed from the waist down. This shut down her bladder function and she developed mononeuritis multiplex which caused severe peripheral neuropathy from her knees down.
[9:48] Ashley was hospitalized for three weeks and then went to a rehab to relearn how to walk. Ashley worked with her urologist to get a medical device to signal when she needs to use the bathroom.
[10:33] Ashley also has heart issues but if she stays on her daily maintenance medications, she does well.
[11:09] Ashley talks about specialists she sees: a pulmonary doctor, an ear, nose, and throat specialist, a women’s healthcare team for bone health, a urologist, a neurologist, and an allergist and immunologist.
[12:18] A good day for Ashley would be if she got out of bed, took a shower, and went to school. A bad day would be not being able to get out of bed and just staying in bed all day and sleeping.
[13:17] Ashley and Holly discuss the “spoon theory.” You start the day with 10 spoons and each activity takes away one or more spoons. When your spoons are gone, you are done for the day. You don’t have more to give.
[16:45] How you can help a friend with EGPA: Join a Facebook group for EGPA. Ashley shares a personal story of an online friend who became an in-life friend. She encourages listeners to explore Facebook groups related to eosinophilic diseases.
[18:31] It’s hard for someonewith no experience with eosinophilic disorders to understand someone with EGPA.
[20:33] There are situations you can explain that help your friends not living with eosinophilic diseases to better understand you.
[21:41] Ashley has medication and a medical deviceto help her manage EGPA.
[22:47] Ashley shares how her care has changed over the last ten years. When she started at the Cleveland Clinic, she went on a biologic to improve lung function that changed her life. She was able to work out again. Her stamina increased. It also helped a little bit with her neuropathy.
[24:40] Ashley shares experiences with school and social activities with EGPA. She was in a college physical therapy program when her sinuses caused her to be admitted to the hospital. The doctors told her it was not feasible for her to continue to her senior year and she was heartbroken. She did not graduate or become a physical therapist.
[26:23] Ashley’s career now is advocacy. She often speaks to new EGPA patients about the disease and treatment options. She also talks to allergy patients. Years ago, Ashley made national news by going into anaphylactic shock on a plane when flying to the Cleveland Clinic and a Cleveland Clinic doctor on the plane saved her life.
[27:38] Ashley’s advice for traveling with EGPA is to wear medical identification jewelry.
[30:03] Ashley refers to those living with EGPA as vasculitis warriors. She always invites them to connect with others on social media and to reach out if they need help.
[30:58] Ryan shares the online resources to help with the day-to-day management of EGPA at apfed.org and apfed.org/connections.
[31:28] Ryan and Holly thank Ashley for sharing her experience. Holly and Ryan thank APFED’s education partners, as well, linked below.
Mentioned in This Episode:
American Partnership for Eosinophilic Disorders (APFED)
APFED on YouTube, Twitter, Facebook, Pinterest, Instagram
Children's Hospital of Philadelphia
Eosinophilic Disease Group on Facebook
Real Talk: Eosinophilic Diseases Podcast
This episode of APFED’s podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.
Tweetables:
“To be real with you, it’s not a walk in the park living with EGPA, let alone being diagnosed with EGPA.” — Ashley
“When I was 16, I started displaying symptoms of EGPA. But at the time, because of my age, they didn’t associate it with anything other than just severe asthma. And then, two years later, I developed the sinus issue.” — Ashley
“By the time I got the diagnosis, I was in the last stage [of EGPA], which is the vasculitic stage. So it was very sad.” — Ashley
“It’s not really seen in youth patients and young adults.” — Ashley