Episodios

  • Comparing Pediatric and Adult EoE

    Comparing Pediatric and Adult EoE
    Apr 30 2025
    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 the questions they considered in the paper and the conclusions they reached. 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: [:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz. [1:17] Holly introduces today’s topic, pediatric and adult eosinophilic esophagitis (EoE), and introduces today’s guest, Dr. Melanie Ruffner. [1:23] Dr. Melanie Ruffner is an attending physician with the Division of Allergy and Immunology in the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia. Holly welcomes Dr. Ruffner to Real Talk. [1:50] As an attending physician in the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia, Dr. Ruffner sees patients who have eosinophilic esophagitis and other eosinophilic disorders, including eosinophilic GI tract disorders. [2:09] Dr. Ruffner also leads a research group that studies how the immune system causes inflammation in response to certain foods, leading to EoE. [2:20] Inflammation in the esophagus is tied to other diseases like epithelial barrier dysfunction and fibrosis. [2:28] Our bodies use many different proteins that allow cells to communicate with one another. One type of signaling protein that causes inflammation is called cytokines. [2:41] Dr. Ruffner’s group is interested in how these signaling proteins called cytokines interact with epithelial cells and how that impacts the oral function of the esophagus in patients with EoE. [3:02] In training, Dr. Ruffner became interested in eosinophilic esophagitis and other non-IgE-mediated food allergies because we don’t have a lot of clear treatments or clear mechanisms that cause them. [3:21] Dr. Ruffner felt there was a lot of work to be done in that area. It was rewarding to be in clinical encounters with those patients. Often, patients had spent a long time trying to find out what was happening and to find a treatment plan that worked for them. [4:31] Dr. Ruffner’s group sees some patients who have eosinophilic gastroenteritis and patients who are referred for hypereosinophilia with impacts of inflammation in other organ systems. [5:06] Dr. Ruffner co-authored a paper about pediatric and adult EoE published in the Journal of Allergy and Clinical Immunology. It explored if EoE in pediatric patients and adult patients is a spectrum or distinct diseases. [5:29] EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to foods and causes inflammation in the esophagus. [5:47] Eosinophils are a type of white blood cell. Eosinophils infiltrate the tissue in the esophagus of people with EoE. Doctors look for eosinophils in the tissue of the esophagus as a sign that inflammation in the esophagus is EoE. [6:04] The symptoms of EoE can vary in children and adults. That was one of the things the doctors were interested in when they were thinking about this paper. There are no blood or allergy tests that make it easy to diagnose EoE, which requires an endoscopy. [6:31] An endoscopy is performed by a gastroenterologist. The gastroenterologists look at the appearance of the esophagus and take biopsies. [6:49] A pathologist counts the eosinophils in the tissue to determine if there are eosinophils present. If there are more than 15 eosinophils in the high-powered field of the microscope and symptoms and clinical conditions are present, EoE is diagnosed. [7:25] One of the variables Dr. Ruffner considers is that symptoms can be different in children versus adults. In older adolescents and adults, the classic symptom is difficulty swallowing or dysphagia. That is often caused by fibrosis in the esophagus. [7:54] In younger children this is often not how EoE presents. They may vomit or ...
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    39 m
  • Full Circle: An Immunologist’s Unexpected EoE Journey

    Full Circle: An Immunologist’s Unexpected EoE Journey
    Mar 25 2025
    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 esophagitis. He tells how his experiences help him in his work with patients. Dr. Accarino shares some education on a variety of allergy mechanisms and the treatments that mitigate them. 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: [:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host Holly Knotowicz. [1:14] Holly introduces today’s topic, immunology support for eosinophilic esophagitis (EoE), and introduces today’s guest, Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital. Holly welcomes Dr. Accarino to Real Talk. [1:49] Holly notes that Dr. Accarino is her allergist and immunologist. [2:03] Dr. Accarino works at Massachusetts General Hospital and Mass General for Children. Allergy and Immunology is a field where he can see pediatrics and adults. Originally trained in pediatrics, now Dr. Accarino sees patients of all ages. [2:23] Dr. Accarino grew up with allergies. He has experienced food allergies since he was young, along with allergic asthma, and some eczema, which he grew out of. Later in life, he was diagnosed with eosinophilic esophagitis. He talks with his patients about his experiences. [2:47] Dr. Accarino also does research on drug allergies in the context of certain drug interactions that involve eosinophils. [3:06] When Holly was referred to Dr. Accarino, it was for multiple sclerosis (MS). He told her, “It looks like you have EoE. I have EoE.” It was a huge relief to Holly not to have to explain EoE to her doctor. [3:41] Some patients start to explain their EoE to Dr. Accarino, and he assures them he understands where they’re coming from. Sometimes, he has to be careful not to think everyone has his symptoms, as there is a large spectrum of presentations. [4:26] Dr. Accarino wasn’t diagnosed with EoE until he was in his allergy fellowship, after he suspected it when he had a food impaction at a steakhouse at a graduation party from his pediatric residency. He tried to manage the EoE with lifestyle changes. [5:39] Dr. Accarino didn’t often go to see a doctor during residency, but he realized it was probably a good time to get an endoscopy. [5:52] Holly shares how she was also diagnosed as a clinical fellow. She was subbing for someone on the GEDP team at Children’s Hospital in Colorado. Listening to all the patients, she realized, “This sounds a little bit like me … What is going on?” [6:23] Even with his medical background, it took Dr. Accarino some time to decide to get the endoscopy and biopsies. You or your doctor have to have a high level of suspicion to realize this isn’t just reflux. Food doesn’t get stuck in every person’s throat. [7:01] Thinking back, Dr. Accarino remembers an instance as a child when a dry muffin got stuck in his throat. He stayed calm and waited for it to pass. He thought it was normal. [7:39] He drank a lot of water and chewed his food a lot. Those are markers of potential esophageal inflammation. [8:20] Different groups have different management strategies for EoE. Dietary management, topical steroids, biologics. A subgroup of people with EoE are responsive to proton pump inhibitors (PPIs). Finding the best management strategy is a work in progress. [8:53] With pediatric patients, the parents control the diet, and the children eat what is prepared. He notes that with adult patients, sometimes they let foods slip through. [9:10] If you want to do a single-food elimination diet with dairy, there’s a lot of dairy in the American diet. Dr. Accarino tried eliminating dairy and wheat, but he still had persistent eosinophils with dietary elimination. [9:24] Dr. Accarino then tried PPIs. To know if you have PPI-responsive EoE, you might do twice-daily omeprazole at a significant dose. Have the endoscopy after a few weeks pass and see if the eosinophils are still present ...
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    39 m
  • The Intersection of Food Allergy and Eosinophilic Esophagitis

    The Intersection of Food Allergy and Eosinophilic Esophagitis
    Feb 27 2025
    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 adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy. This interview covers the results of a research paper on The Intersection of Food Allergy and Eosinophilic Esophagitis, co-authored by Dr. Shreffler. 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: [:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host, Holly Knotowicz. [1:15] Holly introduces today’s topic, the intersection of food allergy and eosinophilic esophagitis. [1:26] Holly introduces today’s guest, Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital and an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. [1:43] Dr. Shreffler’s research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy. [1:54] Holly welcomes Dr. Shreffler to Real Talk. When Holly moved to Maine, she sent her patients to Dr. Shreffler at Mass General. [2:25] Dr. Shreffler trained in New York on a Ph.D. track. He was interested in parasitic diseases and the Th2 immune response. Jane Curtis, a program director at Albert Einstein College of Medicine, encouraged him to consider MD/PhD programs. He did. [3:31] Jane Curtis connected him to Hugh Sampson, who was working with others to help understand the clinical prevalence of food allergy and allergens. [3:51] As a pediatric resident, Dr. Shreffler had seen the burden of allergic disease, caring for kids in the Bronx with asthma. His interest in Th2 immunity, the clear and compelling unmet clinical need, and the problem of food allergy guided his career. [4:31] Dr. Shreffler’s wife has food allergies and they were concerned for their children. Fortunately, neither of them developed food allergies. [5:21] Dr. Shreffler thinks the food allergy field has a lot of people who gravitate toward it for personal reasons. [5:53] Food allergy is an adverse response to food that is immune-mediated. There is still uncertainty about this but Dr. Shreffler believes that a large percentage of patients with EoE have some triggers that are food antigens. [6:27] The broad definition of food allergy would include things like food protein-induced enterocolitis syndrome (FPIES). [6:47] The way we use the term food allergy in the clinic, there are two forms: IgE-mediated allergies and non-IgE-mediated allergies, including EoE. [7:40] Some patients have food-triggered eczema, some have FPIES. [8:04] In 2024, Dr. Shreffler and Dr. Caitlin Burk released a paper that looked at the triggers of EoE, particularly the intersection of IgE-mediated food allergy and EoE. [8:41] Dr. Caitlin Burk joined the group as they were publishing papers on IG food allergy and EoE. It was a moment where things unexpectedly came together. [9:17] Adaptive immunity to food proteins comes from antibodies that cause milk allergy, egg allergy, peanut allergy, or multiple allergies. The IgE has specificity. [9:40] T cells also are specific to proteins. They express a host of receptors that recognize almost anything the immune system might encounter. They have a long memory like B-cells. [10:09] The overlap in these two threads of research was regarding a population of T cells that are important for mediating chronic inflammation at epithelial sites, including the gut. [10:36] These T cells have been described in the airways in asthma, in the skin in eczema, and the GI tract. Researchers years ago had also described them as being associated with IgE food allergy. People with IgE food allergies avoid allergens. [11:13] T cells, being associated with chronic allergic inflammation, now being associated with food ...
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    50 m
  • Guidelines for Childhood non-EoE EGIDs

    Guidelines for Childhood non-EoE EGIDs
    Jan 22 2025
    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 created and shares some of the results, including an algorithm for diagnosing non-EoE EGIDs. She shares why she specialized in EGIDs and what her hopes are for the future development of the guidelines. 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: [:49] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz. [1:13] Holly introduces today’s topic, guidelines for childhood eosinophilic gastrointestinal disorders (EGIDs) beyond eosinophilic esophagitis (EoE). [1:27] Holly introduces today’s guest, Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children’s Hospital Medical Center. [1:38] Dr. Collins specializes in the pathology of pediatric gastrointestinal disease, especially EGIDs, and is a central pathology reviewer for the Consortium of Eosinophilic Gastrointestinal Researchers (CEGIR), as well as a member of APFED’s Health Sciences Advisory Council. [2:11] As a pathologist, Dr. Collins examines biopsies microscopically. For EGIDs, she determines the peak count of eosinophils per high-power field, or reports the numbers of eosinophils in multiple high-power fields, and analyzes the tissue for additional abnormalities. [2:33] Dr. Collins then issues a report that becomes part of the patient’s medical record and is provided to the patient’s doctor. [2:41] The biopsies Dr. Collins examines may be the first biopsies for a diagnosis, or follow-up biopsies to determine response to therapy, or as part of ongoing monitoring to determine if inflammation has returned even if the patient has no symptoms. [3:07] Dr. Collins was inspired to specialize in EGIDs after speaking with patients with EGIDs. She used to give tours of the pathology lab at Cincinnati Children’s Hospital. She met affected children and their caregivers. Their courage and gratitude moved her. [3:43] Ryan mentions the wonderful patients and their families in the APFED community. Holly says that as a patient, it’s fascinating to meet a pathologist. Pathologists are generally behind the scenes. [4:42] Dr. Collins specializes in GI pathology, including eosinophilic-related conditions in the GI tract. EoE, eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis. [5:16] In January 2024, “Guidelines on Childhood EGIDs Beyond EoE” were published in the Journal of Pediatric Gastroenterology and Nutrition. Dr. Collins served on the task force that prepared the guidelines. [5:35] Non-EoE EGIDs affect all sites of the GI tract except the esophagus. All sites of the GI tract except the esophagus normally have eosinophils in the mucosa, which complicates the diagnosis. [6:03] Like EoE, the diagnosis of non-EoE EGIDs is made after known causes of tissue eosinophilia are excluded. [6:28] Consensus guidelines help bring attention to best practices and encourage uniformity of practices. [6:50] This is especially important for rare diseases and for centers that see fewer patients with rare diseases than the more specialized centers. Guidelines based on the best information available help these centers. [8:03] The best distribution of guidelines is to publish them in the medical literature and sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists. Guidelines may be presented at national meetings to increase awareness. [8:36] Several specialties are involved in the care of patients who have EGIDs. If patients or caregivers learn of published guidelines, they can also inform their providers. [9:23] Insurance is a big issue for so many patients. Getting coverage for both diagnostic and treatment options can be complex. [9:50] The guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition. However, if the ...
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    34 m
  • Eosinophilic Fasciitis (EF), with Dr. Catherine Sims and Jason Ingraham

    Eosinophilic Fasciitis (EF), with Dr. Catherine Sims and Jason Ingraham
    Dec 18 2024
    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 journey to diagnosis and the importance of working with a group of specialists. They share tips on medication and physical therapy, how to communicate with your medical team, and manage your activity and mindset. 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: [:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz. [1:14] Holly introduces today’s topic, eosinophilic fasciitis, with guests, Jason Ingraham and Dr. Catherine Sims. [1:25] Jason is an adult living with eosinophilic fasciitis (EF). Dr. Sims is a rheumatologist at Duke University and a Health Services Research Fellow at the Durham Veterans’ Affairs Hospital. [1:52] Dr. Sims explains what EF is. Patients may present with symptoms of large plaques on their skin, edema of arms and legs, Raynaud’s Phenomenon, contractures of arms or legs, limited mobility, or loss of the ability to do tasks they used to do. [2:42] EF, as with most eosinophilic disorders, doesn't follow the textbook. Some people will present with one symptom and some with multiple symptoms. There is a disconnect between how we diagnose conditions like EF and how patients present. [3:01] There are major and minor criteria for the diagnosis. As in Jason’s case, it takes time for the symptoms to present. Things develop over time. It took multiple specialists to diagnose Jason. [3:38] Eosinophilic conditions are incredibly different from each other. When Dr. Sims sees a patient with high eosinophils, she thinks of three major buckets: infection, autoimmune diseases, and cancer. [4:12] Patients will often see many different specialists. In Jason’s case, they had done a skin biopsy that wasn’t as helpful as they hoped. That led him to get a deep muscle biopsy to collect the lining of the muscle. [4:47] Fasciitis is the inflammation of the muscle lining or fascia. A sample of the fascia can demonstrate under the microscope if there is a thickening, swelling, or inflammation of the lining of the muscle. [5:24] Dr. Sims as a rheumatologist treats a number of rare diseases. Eosinophilic fasciitis is an ultra-rare disease. [5:43] Jason had a local primary care doctor and a rheumatologist who both did a really good job and referred him to Dr. Sims. She had the benefit of their hard work to guide her next steps. Because EF is so rare, she has pitched Jason’s case twice in rheumatology grand rounds sessions. [6:18] During one of these sessions, Dr. Sims was advised to get the fascial biopsy that ultimately led to the diagnosis. She benefited from the intelligence and input of dozens of doctors. [6:59] In the Fall of 2022, while hiking on vacation with his wife, Jason was extremely fatigued, and his forearms and lower legs swelled. His socks left deep impressions. It was difficult to reach his feet to put socks on. He spent a lot of time uncharacteristically resting. [8:09] Jason’s primary care doctor ran lots of blood tests. He thought it might be a tick bite. Jason started seeing specialists, having tests and hospital visits. [8:57] Jason worked with a rheumatologist in Wilmington, an infectious disease doctor, and a hematologist/oncologist who reached out to a Duke expert. He also saw a pulmonologist and a dermatologist. He got the referral to Dr. Sims for March of 2023. [9:57] The first diagnosis Jason received was after his first hospital stay in January of 2023, when he had bone marrow biopsies, CT scans, ultrasound, and other tests. He was deemed to have idiopathic hypereosinophilic syndrome (IHES). [10:30] It was only a few weeks before his local rheumatologist said his panels were back and one tipped it from an IHES diagnosis to eosinophilic granulomatosis with polyangiitis (EGPA). He joined the Vasculitis Foundation and researched EGPA. [11:03] Dr. Sims told Jason that EGPA was a working diagnosis but he didn’t check all the ...
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    44 m
  • The Evolution of Eosinophilic Gastrointestinal Disorders, with Dr. Dan Atkins

    The Evolution of Eosinophilic Gastrointestinal Disorders, with Dr. Dan Atkins
    Nov 22 2024
    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. 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. 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: [:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz. [1:19] Holly introduces today’s topic, the evolution of eosinophilic gastrointestinal disorders, and the guest, Dr. Dan Atkins, a pediatric allergist at Children’s Hospital Colorado. [1:32] With more than 40 years of experience as an allergist, Dr. Atkins has seen the evolution of eosinophilic disease patient care first-hand and helped establish the Gastrointestinal Eosinophilic Disease Program at Children’s Hospital Colorado. [1:46] The Gastrointestinal Eosinophilic Disease Program is a multi-disciplinary program designed for the optimal evaluation and treatment of children with eosinophilic gastrointestinal disorders. [2:10] Dr. Atkins thanks Holly, Ryan, and APFED for programs like this podcast to help educate the population of patients with eosinophilic gastrointestinal diseases. [2:39] Dr. Atkins chose a pediatric residency. The last rotation was with an incredible allergist, Dr. Lenny Hoffman, in Houston. Dr. Atkins loved seeing patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. [2:59] The thing Dr. Atkins liked about it was he could take kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well. He could see a change in their quality of life. That got him started. [3:22] Dr. Atkins did an allergy and immunology fellowship in Buffalo, New York with Dr. Elliott Ellis and Dr. Elliott Middleton who had just written the Allergy: Principles and Practice text. They were incredible, brilliant mentors and wonderful people. [3:55] Dr. Atkins went to the National Institutes of Health to do basic science research after learning of a double-blind, placebo-controlled food challenge by Dr. Allan Bock and Dr. May in Denver. [4:27] Dr. Atkins did a clinical project on food allergy with Dr. Dean Metcalf, which was one of the first double-blind, placebo-controlled food challenges in adults. They published two papers on it. [4:47] Then Dr. Atkins went to work on the faculty of National Jewish Health. He was there for 25 years. [5:04] Dr. Atkins was invited to join the Children’s Hospital of Colorado because they wanted to start an allergy program there. [5:21] Dr. Atkins got interested in eosinophilic gastrointestinal diseases in 2006 after he saw a patient who had had difficulty eating, eosinophils in his esophagus, and food allergies. In another state, a doctor had put him on an elimination diet and he got better. [5:42] The patient moved to Denver. Dr. Atkins saw him and found the case to be interesting. He looked in the literature and found an article on eosinophilic esophagitis by Dr. Alex Straumann. [5:53] A gastroenterologist, Dr. Glen Furuta, came to Children’s Hospital, looking to work with an allergist. Dr. Atkins met with him and they hit it off. They saw the need for a multidisciplinary program to take care of these patients. [6:31] Dr. Atkins has always been interested in diseases that led to eosinophilia. Most of them were allergic diseases. Eosinophilic esophagitis and other eosinophilic gastrointestinal diseases came along with much more of a focus on eosinophils in the gut. [6:45] The first case of eosinophilic esophagitis that Dr. ...
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    49 m
  • Navigating Eosinophilic Esophagitis in College with Kate Goncalves

    Navigating Eosinophilic Esophagitis in College with Kate Goncalves
    Oct 24 2024
    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. 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: [:49] Ryan Piansky introduces the episode, brought to you thanks to the support of education partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Mary Jo Strobel. [1:31] Mary Jo introduces Kate Goncalves, a 20-year-old living with EoE. Kate is the 2024 recipient of The APFED Abbott College Scholarship, thanks to a grant from Abbott, the makers of the EleCare® brand elemental formula. [2:05] Kate is from a small town in Connecticut. She is a junior at Vanderbilt University, studying biology and anthropology. She grew up with day-to-day symptoms of EoE but only expressed the symptoms to her doctor when she was 16 years old. [2:23] At that point, she underwent testing and was diagnosed. Since then she has been trying to find a treatment plan that works for her. She has navigated changes in her treatment plan while going away to college. She comments that, in college, you don’t always have control over the food you eat. [2:42] It has been a challenge but she has a great support system and care team. [3:15] In middle and high school, Kate got a food impaction nearly every day at lunch. She thought it was normal. When she finally brought it up to her primary care physician, the doctor suspected EoE. She also had the symptoms of heartburn or acid reflux. [4:15] Kate immediately had an endoscopy scheduled and was then diagnosed with EoE. [4:22] Prior to a diagnosis, Kate coped with symptoms by drinking “a ton” of water with foods to help them go down her esophagus, which was narrowed from scarring. She also avoided bread and meats. She only recognized these as adaptive behaviors after she was diagnosed. [5:32] Kate was referred to a gastroenterologist. That doctor is still part of Kate’s care team. She also saw a nutritionist when looking for a treatment plan that worked for her. [6:02] Kate avoids anything with dairy in it. Her elimination diet removed anything made with butter, milk, yogurt, and more. At her follow-up endoscopy, her eosinophils were way down so she didn’t have to go through the six-food elimination diet. She was very grateful. [6:43] Mary Jo clarifies for listeners who may not be familiar with the six-food elimination diet, that the foods removed from the diet are typically milk, egg, wheat, soy, peanut/tree nut, and fish/shellfish. [7:05/] Kate says it was a tough transition because more foods than you might expect have milk in them. She is grateful she didn’t have to cut out gluten or nuts. [7:32] Kate admits that sometimes she knows there is dairy in the food and eats it anyway. Then the symptoms are most often severe acid reflux and heartburn. She’ll get a food impaction if she’s been eating dairy for days or a lot of it at once. [8:35] At school, sometimes the dining hall workers aren’t aware if a food has dairy in it. Some foods are mislabeled as vegan. So Kate often has dairy without knowing it until symptoms appear later. [9:12] Kate is on a proton pump inhibitor twice a day and a steroid medication. Her first treatment was the elimination of dairy. The summer before going to college, she was also put on these two medications, in case she was exposed to dairy. [10:50] Kate had to switch from one steroid medication to another because the first one wasn’t working for her varying schedule. She asked her doctor for another medication that fit her schedule better. [11:31] Kate is very grateful to feel autonomy over her treatment plan. She feels her gastroenterologist is amazing. Kate is ...
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    34 m
  • Treating EoE as an Allergist with Dr. Priya Bansal

    Treating EoE as an Allergist with Dr. Priya Bansal
    Sep 19 2024
    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 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. 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: [:51] Ryan Piansky introduces the episode and co-host, Holly Knotowicz. Ryan and Holly will talk about eosinophilic esophagitis (EoE) and how an allergist can help. [1:25] Holly introduces Dr. Priya Bansal, an internist, pediatrician, and allergist, who is on the faculty of Northwestern Feinberg School of Medicine and practices at the Asthma and Allergy Wellness Center in Illinois. [2:06] Dr. Bansal does research and consulting and in a private practice. Throughout her 20-year career, she has enjoyed treating chronic and difficult-to-treat diseases. [3:06] Now, she enjoys patient advocacy, advocating for EoE, and working with the American College of Allergy, Asthma, and Immunology House of Delegates and the American Academy of Allergy, Asthma, and Immunology. [3:38] For new listeners, EoE is an allergic and immune disease of the esophagus. With EoE, eosinophils are found in the lining of the esophagus, causing inflammation, and inviting more eosinophils. EoE is a chronic inflammation of the esophagus. [4:30] A child might have symptoms of food refusal, regurgitation, and abdominal pain. Adults may feel food sticking. The standard for finding eosinophils is endoscopy with six biopsies; two proximal, two mid, and two distal. [5:24] It is a patchy disease, so the allergist will want to partner with a gastroenterologist who will do the biopsies at the three different levels. [6:10] Holly tells how she didn’t get diagnosed until she was in her mid-twenties. Her doctors thought she was vomiting for attention. They were not familiar with EoE. She was diagnosed as an adult when working at a major hospital. [7:00] An allergist at a big academic center, working together with a team of doctors from multiple disciplines, may find it easier to diagnose EoE. Many allergists are not working on multi-disciplinary teams. [7:34] An allergist can look at the resources in the community. Dr. Bansal has several gastroenterology centers that refer patients to her. They partner with Dr. Bansal on the diagnosis and treatment. [8:02] In other clinics, it may be the gastroenterologist who takes the lead in treatment and refers to the allergist to manage the allergic disease that exists on top of the EoE. [8:21] As a patient, the diagnosis process depends on where you live. If you have symptoms, don’t give up. When Dr. Bansal started, she had to ask pathologists to stain biopsies for eosinophils. Today, staining is done routinely; she doesn’t need to ask for it. [9:07] You are your best advocate. If somebody doesn’t believe you, that doesn't mean somebody else won’t. [9:22] Holly is a feeding specialist in Maine. In the three years she has been there, more than 100 people whom she has referred have been diagnosed with EoE. [10:24] Dr. Bansal says that whether you see an allergist or a GI doctor, depends on which specialty takes the lead on EoE in your community. If you do not have a good rapport with your doctor, make a change. Partner with a doctor who advocates for you. [11:59] Dr. Bansal advises that when seeing a different doctor, to print out your biopsies to bring. If you are using a biologic therapy, print out the scope that you had right before your biologic therapy, too. That biopsy is your golden ticket if you switch insurance companies. [13:02] Dr. Bansal uses Care Everywhere, but she wants to see prints of your labs anyway. Not everyone opts into Care Everywhere. She likes the Patient Portal and she is looking forward to someday having a universal portal. [13:43] Dr. Bansal recommends patients sign up with the Portal for their allergist and GI doctor to facilitate communication. [15:14] Patients can scan their ...
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    55 m
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