Podcasts about Eosinophilic

Show Notes This month, the Skin Flint team welcome RCVS & European Specialist Debbie Gow to the platform to explore Eosinophilic granuloma complex (EGC). (00:00) John Sue and Paul introduce the podcast.   Chapter 1 – What on Earth Is Eosinophilic Granuloma Complex?   (02:55) Sue welcomes Debbie Gow to the podcast and invites her to introduce herself. Debbie shares that she is a specialist in veterinary dermatology, working at a busy referral hospital outside Edinburgh. She describes her role in setting up the dermatology service, working with a resident and derm nurse, and her continued involvement in CPD and writing.   (04:05) Sue introduces the topic: eosinophilic granuloma complex (EGC) in cats. She jokes that it's sometimes referred to as “eosinophilic granuloma confusion” due to its complexity and terminology. She asks Debbie to break it down explaining that EGC is an umbrella term for three lesion types: Linear granulomas: Seen on the backs of legs, chin, or in the mouth. May or may not be itchy. Plaques: Often pruritic, ulcerated, and secondarily infected. Found on the ventrum or medial thighs. Indolent ulcers: Located on the upper lip, may appear crater-like.   (07:28) Sue asks about miliary dermatitis. Debbie considers it a separate reaction pattern, not part of EGC, though also common and allergy-associated. (08:15) John asks about age, breed, or sex predispositions. Debbie explains that while any cat can be affected, young adult cats (6 months to 5 years) are most likely to develop these lesions. Females may be slightly overrepresented, but evidence is limited. (09:27) John inquires about geographical prevalence. Debbie confirms EGC is seen globally wherever cats are present and exposed to allergy triggers.   Chapter 2 – Lookalikes, Lip Lesions & Licking Cats: Sorting the EGC Puzzle (10:21) Sue asks whether EGC lesions are pathognomonic or if there are important differentials. Debbie stresses the importance of not assuming a diagnosis without investigation whilst they can have a classical appearance: Cytology is key to identifying eosinophils. Differentials include squamous cell carcinoma (particularly for lip ulcers), mycobacteria, fungal infections, and viral diseases.   (12:37) Sue asks about a minimum diagnostic approach. Debbie advises: Cytology Wood's lamp and trichogram to rule out dermatophytosis Consideration of biopsies if in doubt   (14:08) Sue asks how to perform cytology. Debbie describes: Tape prep for dry lesions Cotton bud for moist/crusted areas Direct impression with a slide   (14:59) Sue asks how often infection is present. Debbie says: Infections are uncommon but more likely with plaques due to licking Cytology helps assess if antibiotics are needed Most cases are treated with anti-inflammatories rather than antibiotics   (16:52) John asks about allergic patterns in cats. Debbie describes four main reaction patterns: Miliary dermatitis Head and neck pruritus Ventral overgrooming Eosinophilic lesions She notes cats may display multiple patterns and also non-skin signs like conjunctivitis, otitis, or sneezing. (19:02) John asks if specific allergies present with specific signs. Debbie says it's inconsistent. While flea allergy is often associated with miliary dermatitis and food allergy with head/neck pruritus, patterns vary and aren't reliable for diagnosis.   Chapter 3 – Practical Approaches: From Kitchen Floor to Referral Door   (21:23) John asks what owners might notice or try at home. Debbie recommends: Observing behaviour Keeping a diary Ensuring flea control Considering recent diet or environmental changes   (23:30) Sue asks about food trial myths. Debbie emphasises: Over-the-counter “hypoallergenic” foods are not suitable for true food trials Prescription hydrolysed diets or novel proteins (e.g. ostrich, kangaroo, crocodile) are required Food trials should run for ~8 weeks She also recommends: Treat toppers to help encourage eating Short-term feeding is usually nutritionally safe Veterinary nutritionist input for longer-term plans   (28:43) Sue asks how to start a food trial if a cat is self-traumatising. Debbie uses concurrent systemic treatment (usually steroids) to control inflammation during the trial, tapering meds over 4–6 weeks if possible. (30:05) John asks for the first steps as a guide for primary care vets. Debbie recommends her first steps would be to rule out ectoparasites with full household flea control, possibly whilst beginning topical/systemic treatment as needed for comfort (32:10) Sue asks what to do when left with suspected environmental allergy. Debbie describes: Referral approach: Intradermal testing and immunotherapy if cost allows (40–75% success rate) Primary care approach: Use steroids at the lowest effective dose Importance of prioritising flea control and food trial first as they are often curative   (36:50) Sue and Debbie have a healthy debate on the relative benefits of allergy testing when immunotherapy is not being considered as an option.  (41:08) John wraps up the episode, thanking Debbie for simplifying a complex topic and helping listeners better understand eosinophilic granuloma complex in cats. John asks Paul and Sue another probing - if not questionable - question.

In this episode, we review the high-yield topic ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Eosinophilic Granulomatosis with Polyangiitis (Churg- Strauss Syndrome) ⁠⁠⁠⁠⁠⁠⁠⁠from the Rheumatology section at ⁠⁠⁠⁠⁠⁠Medbullets.com⁠⁠⁠⁠⁠⁠Follow⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Medbullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on social media:Facebook: www.facebook.com/medbulletsInstagram: www.instagram.com/medbulletsofficialTwitter: www.twitter.com/medbulletsLinkedin: https://www.linkedin.com/company/medbullets

In this episode, hosts Drs. Temara Hajjat and Jenn Lee talk to Drs. Glenn Furuta and Noam Zevit about the diagnosis and management of eosinophilic GI disorders (EGIDs) beyond eosinophilic esophagitis based on the new joint ESPGHAN/NASPGHAN recommendations.Learning Objectives:Discuss the diagnosis of non-EoE EGIDs.Explain the role of pathology in diagnosis of non-EoE EGIDs.Review management of non-EoE EGIDs.References:Joint ESPGHAN/NASPGHAN Guidelines on Childhood Eosinophilic GI Disorders Beyond Eosinophilic EsophagitisSupport the showThis episode may be eligible for CME credit! Once you have listened to the episode, click this link to claim your credit. Credit is available to NASPGHAN members (if you are not a member, you should probably sign up). And thank you to the NASPGHAN Professional Education Committee for their review!As always, the discussion, views, and recommendations in this podcast are the sole responsibility of the hosts and guests and are subject to change over time with advances in the field.Check out our merch website!Follow us on Bluesky, Twitter, Facebook and Instagram for all the latest news and upcoming episodes.Click here to support the show.

Eosinophilic lung disease is often an overlooked yet significant entity in respiratory medicine. In this episode of MedPOD AFMC, host Maj (Dr) Harikrishnan P engages in a deep dive into this intriguing condition with expert guest Surg Lt Cdr (Dr) Srinath V, a pulmonologist of national repute. Listeners will gain insights into a structured diagnostic approach, including the role of lung biopsy—when it is necessary and when it can be avoided. Tune in to this insightful discussion to enhance your understanding of eosinophilic lung disease and refine your approach to diagnosis and management. Stay curious, stay informed, and keep learning with MedPOD AFMC!

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 boxes. There was the underlying thought that maybe it was something else. He had a second flare when he came off of prednisone in June of 2023.   [11:48] Dr. Sims scheduled Jason for a muscle biopsy while he was off steroids. That's how he got the diagnosis of eosinophilic fasciitis (EF). Jason says the disorder is hard for him to pronounce and he can barely spell the words.   [12:52] Jason's wife Michelle encouraged Jason to track his symptoms and medications and keep track of data. Going from specialist to specialist, the first thing he did was give the history.   [13:31] Jason found it helpful to create a spreadsheet of data with blood test results, meds, how he was feeling each day, his weight, and even notes about when he had difficulty putting his socks on. Jason is an advocate of owning your continuity of care as you see different doctors.   [14:42] Jason says the doctors at Duke talk very well between themselves.   [14:49] Jason likes to look back at that spreadsheet and see how far he's come, looking at the dosage he was on during and after flares and the dosage he's on now, or zero, on some of the medications. That's a little bit of a victory.   [15:16] Holly works at a private hospital without Epic or CareEverywhere so she gives physical notes to her patients to give to their doctors. She comments that a great PCP, like the one Jason had, can make all the difference in the world.   [16:18] Jason's PCP, Dr. Cosgrove, referred Jason to Duke for a second opinion. That was where he met Dr. Sims. He's glad to have both Dr. Sims and his PCP accessible.   [17:35] Jason says the number of questions you have with this type of thing is immense. When you look up EF, you find very little and the literature isn't easily digestible by patients. Being able to reach out to your doctors for a quick question is super helpful. [17:56] Jason has been able to do telehealth follow-ups and not always have to travel or take off work, which has been extremely helpful. He has been at Duke a good handful of times for various things but remote follow-ups are helpful.   [18:52] Dr. Sims says people just don't know about EF as it is an ultra-rare diagnosis. Even physicians don't understand what causes it. It's lumped in with all other eosinophilic conditions but these disorders don't all present the same way.   [19:19] EoE doesn't look like EF, even though they're both driven by the same immune cells. Dr. Sims says the first need is educating providers and patients on what the diagnosis is; awareness in general when a patient is having this swelling of extremities.   [19:44] Dr. Sims says at his baseline, Jason is very active with multi-mile hikes. When Dr. Sims met him, he was off from the baseline of what he was able to do. Being aware of your baseline and changes from that is very informative for doctors.   [20:07] Dr. Sims talks about the patient being a liaison between multiple specialists. Bringing data to your subspecialist always helps facilitate care and come up with a bigger picture of what's happening.   [20:23] Jason first went to Dr. Sims with the diagnosis of EGPA. She said, let's treat the EGPA and see what happens but they kept an open mind. With ultra-rare diseases, sometimes it's difficult for patients not to have a label for their condition.   [20:45] Dr. Sims explains to her patients that sometimes we live in the discomfort of not having a label. She keeps an open mind and doesn't limit herself to just one diagnosis. She seeks feedback from providers who have seen this before and know what works.   [21:07] Just as Jason described, you will go through multiple diagnoses. Is this cancer? Is it a parasitic infection? Where did you travel? You will see many subspecialists. It's extremely anxiety-provoking.   [21:31] When Dr. Sims did her grand rounds, she gave a third of the presentation, and the other two thirds were presented by an infectious disease doctor and a hematologist. In these cases, you need more than one subspecialist to complete the workup.   [22:10] Dr. Sims says there are a lot of misconceptions that the patient will get the diagnosis right away and the right therapy and get better. There are multiple therapies, not just medications. There are lifestyle and work modifications; it's a gradual process.   [22:22] One of Dr. Sims's goals for Jason and Michelle is to get back to doing the things that they enjoy, tennis and hiking. That's a measurement of the quality of life that a patient has.   [22:34] Talking to your doctors about how you're feeling and how you're functioning is huge. It may be that this is your new normal, but it may also be that we can make adjustments to maximize your quality of life.   [23:00] There are misconceptions about the journey of diagnosis and treatment. Have a close relationship with your subspecialist. PCPs have a high burden of expectations. As a rheumatologist who treats rare diseases, it's helpful to take on a part of that burden.   [22:31] If you don't have good communication with your providers and they aren't listening to you, you can always go get another opinion. The provider relationship is life-long.   [23:43] It's important for your provider to take what's important to you into consideration when they make treatment decisions.   [25:00] As a rheumatologist, steroids are a first-line therapy for Dr. Sims. Their role is the quick control of inflammation. The goal is always to get you off of the steroids as soon as possible, in the safest way possible.   [25:17] When Jason came to Dr. Sims, he was on mepolizumab for the working diagnosis of EGPA. Mepolizumab is one of the primary therapies for EGPA. They talked about not making treatment changes as they were navigating what was happening.   [25:40] They didn't want to make a change of medication and then have that be mistaken for disease activity. They didn't want too many variables moving at once.   [25:47] Typically, the first-line therapy is steroids, meant to help with the swelling, pain, and tightness that patients will get lining their muscles and give them a bit more functionality and decreased pain.   [26:00] Long-term, Dr. Sims gives immunosuppressant medication. She prescribed methotrexate for Jason. In EF, the immune system is overly activated, attacking the lining of the muscles and causing the symptoms.   [26:51] If you suppress the immune system activity, that leads to decreased inflammation and symptoms in the patient. Steroid use, over a few months, is detrimental, with low bone density, weight gain, high blood pressure, and diabetes.   [27:14] Dr. Sims starts with prednisone and folds in medications like mycophenolate or methotrexate.   [27:19] Mepolizumab is an interleukin 5 blocker. Interleukin 5 is part of the immune system and is necessary for eosinophils to grow, function, and multiply. The goal of using mepolizumab is to lower the eosinophils that are contributing to the disease symptoms.   [27:48] Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer. We know how to manage those.   [28:08] If there is no response, we may add something like mepolizumab. As Jason was already on mepolizumab, Dr. Sims added methotrexate.   [28:20] IVIG, an infusion of immunoglobulin, has also been used as a quick way to control inflammation. It is used in other autoimmune diseases like myositis, which is inflammation of the muscle itself.   [29:08] With untreated eosinophilic fasciitis, the lining of the muscle may continue to be inflamed and can lead to fibrosis, damage that cannot be reversed. The patient can become very disabled. Contracture is one result of this.   [30:16] Jason says when he tried a new medication, he monitored if it was a good fit and if the side effects were less impactful than the underlying disease. Dr. Sims adjusted his dosages or tried to get off certain medicines as needed.   [30:59] After his muscle biopsy from his left calf, it took about a month to get back to walking easily. He was already in physical therapy, going many times for a variety of things. He had back pain, potentially related to his EF. His physical therapist was great.   [31:56] The stretches alternated between upper and lower body. Jason bought tools to do the stretches at home. When he's not feeling as well, he goes back to some of those same stretches. When he was on steroids, he took long walks to strengthen his bones.   [32:39] Jason started making phone calls to supportive family and friends on his walks and started listening to podcasts related to his condition or medications. Getting back to tennis and hiking is important to Jason. He's happy to be out there.   [33:20] Jason was open with his employer about his condition. Some of the weekly meds can make him not feel well. His employer gives him some flexibility. He has good days that far outnumber the bad days. He doesn't have to think about EF too much now.   [34:33] It's nothing like when he was in a flare, especially when he was in a flare before being diagnosed. What gets him through a bad day is giving himself some grace and understanding while he waits for his meds to catch up. He rests more than he wants to.   [35:33] Low-impact exercises like walking help Jason. He's trying to find a support network that gets EF. That led him to APFED, to find anyone experiencing something like what he was. He saw a conference that included a session on EF.   [36:09] Jason signed up for the conference and there he met Ryan's mother who has EF. They were each the first person the other had met with EF. They decided to connect after the conference. They talked on the phone for about an hour.   [36:39] She told Jason how she got into APFED and talked a lot about her son who had eosinophilic diseases. Soon after, Jason talked to Ryan as a primer for this podcast.    [38:15] Having a community to relate to, even if it's one person, is massive. It can make you feel less isolated.   [38:42] Holly says it's hard having a chronic illness. She thanks both Jason and Dr. Sims for sharing so much information and their journey and she asks for last words.   [38:58] Dr. Sims believes finding a community is critical. She interviews a lot of patients for research and isolation is a frequent theme. Even the doctor doesn't know what it's like to live with the condition you live with daily. As Jason said, give yourself grace.   [39:33] Dr. Sims tells her patients that they're different from the general population because they have to spend so much time and energy managing their condition that they can't do x, y, or z today, and that is OK. She says to stay motivated and positive.   [40:12] Find what works for you. Walking is good for your physical and mental health. Have the goal of getting back to what makes you happy. Take initiative and find non-medication ways to recuperate. You have control over ways you can feel better.   [40:43] Connect with others and share your story, like Jason did today. It may make someone's journey a little easier and make them feel less alone. Utilize your condition for good, for a bigger purpose.   [41:04] Jason had wished he could meet someone who could tell him what EF would be like over the years. He says to stay positive and find out what you have control over. Jason believes the future is bright for being able to do many things for a long time.   [42:26] For our listeners who would like to learn more about eosinophilic fasciitis, please visit APFED.org and check out the links in the shownotes.   [42:33] If you're looking to find a specialist who treats eosinophilic disorders, like Dr. Sims, you can use APFED's Specialist Finder at APFED.org/specialist.   [42:43] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections/.   [42:55] Ryan thanks Jason and Dr. Sims for joining us for this excellent conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.   Mentioned in This Episode: Dr. Catherine Sims, rheumatologist Duke University Hospital Durham VA Medical Center   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “EF patients may present with 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.” — Dr. Catherine Sims   “Steroids are … first-line therapy. Their role is the quick control of inflammation. The goal is always to get you off steroids as soon as possible, in the safest way possible.” — Dr. Catherine Sims   “Methotrexate, prednisone, and mepolizumab can work synergistically or independently. Most rheumatologists start with methotrexate or mycophenolate which have fewer side effects and have been around longer.” — Dr. Catherine Sims   “Stay positive and find out what you have control over. The future is bright for being able to do many things for a long time.” — Jason Ingraham

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. Atkins treated was a patient in 2006. He believes he probably missed earlier cases just by not asking the right question, which is, “Does your child eat slower than everybody else?”   [7:18] Once Dr. Atkins started asking patients that question, it stunned him to find out how many patients said that was part of the issue. He followed up with testing and, sure enough, they had eosinophilic esophagitis.   [7:45] Dr. Atkins says that, in general, eosinophils are present in allergic conditions. If you look at “allergic snot,” and stain it up, it's full of eosinophils. If you have eosinophilic esophagitis and allergic rhinitis, if you swallow snot, it will impact your EoE.   [8:40] Dr. Atkins tends to be more aggressive with using a topical nasal steroid spray with patients who have allergic rhinitis because that decreases the eosinophils in the nose.   [8:50] Dr. Atkins says since eosinophils are on their way to areas that are involved in allergic inflammation, that's how Dr. Atkins got interested in eosinophils. It played out with the multidisciplinary group and eosinophilic esophagitis.    [9:07] Ryan went to see Drs. Atkins and Furuta when he was eight. Ryan is so thankful he was able to go to their clinic and is grateful that the doctors helped to create one of the first programs dedicated to treating EGIDs in the U.S.   [9:40] Dr. Atkins credits Dr. Furuta with the multidisciplinary program. They discussed who needed to be part of it. A gastroenterologist first but Dr. Atkins thought an allergist was also necessary. Treating other allergies helps the patient's eosinophilic condition.   [10:51] They decided they needed excellent nurses who loved working with kids. A lot of the kids had trouble eating, so the group needed feeding therapists and dieticians because these kids have a limited diet. They also needed a pathologist to read the slides.   [12:59] Because this is a burdensome disease, they needed psychologists for the child and the family. Learning coping mechanisms is a big part of the experience.   [14:20] As the program progressed, they saw they needed an endocrinologist to look at the children who weren't growing as expected. In clinic, they needed a child health person who could play games with the kids and keep them engaged during the long visits.   [14:44] That was how the program evolved. They had an idea but they had to show people it would be an active clinic that would grow and they had enough patients to warrant the program. It happened quickly.   [14:54] The program is fortunate to have a wonderful group of people who get along well and check their egos at the door. There are lots of conversations. Everybody's willing to listen and put their heads together. They compare notes and histories.   [15:46] Holly had been working as a feeding specialist at the hospital. Someone was on leave so Holly was put into the clinic. She had never heard of EoE; she didn't know she had it! Her first meeting was a roomful of professionals comparing notes on patients.   [16:31] Holly was in disbelief that these medical professionals met together for an hour weekly to discuss their patients with each other. Later, Holly followed a patient with Dr. Atkins, then Dr. Furuta, then a dietician, and then a nurse. [17:01] As she followed the patient, Holly listened and recognized the symptoms. She thought that she might have EoE! She introduced herself to Dr. Atkins and asked for a referral for a diagnosis. She was diagnosed that year with EoE.   [17:25] Holly sees many unique things about the program. She was impressed that they had the foresight to include a feeding specialist, not a common specialty at the time. Holly also thinks it's neat that the clinic sees patients from all over the country. [18:01] Dr. Atkins says the availability of care is improving across the country. When the program began, people had not heard of eosinophilic esophagitis, not even the local pediatricians. Allergists were just becoming aware of it. They had to be educated.   [18:29] There were people in other communities who didn't have access to multidisciplinary care. Over time the word has spread. Pediatricians are referring patients to the clinic for diagnosis. Care availability has improved.   [18:55] Not every patient needs a multidisciplinary program. If you have mild to moderate eosinophilic esophagitis and you're responding to a current therapy, are doing well, and are communicating well with your provider, that's great!   [19:10] If you need a second opinion or if you have a complicated case, there are some benefits to multidisciplinary care.   [19:33] The providers at the clinic listen to the children as well as to the parents. When a food is removed, a dietician can suggest an alternative the child might like.   [20:07] The clinic wanted to treat local patients but go beyond that, as well. They learn a lot from seeing patients from all over the country with different exposures and being treated by different doctors.   [20:17] When Ryan was young, he would go from his home in Georgia to Denver, yearly. He reflected it felt like summer camp. He got a scope one day and saw the full team of specialists the next few days. It was different from how he was treated before.   [21:06] Ryan says he was listened to and heard, and it was such a great experience for him as a patient to be seen in Dr. Atkins's clinic.   [21:46] Dr. Atkins says they are trying to teach children to be their own advocates. If the doctor does not listen to what the patients have to say, why should they be involved?   [22:50] A patient experience at the clinic starts with somebody deciding they need to go there and get a second opinion or a diagnosis. They get a referral to the clinic. Dr. Atkins mentions the need for administrative staff as part of the clinic team.   [23:40] The patient fills out forms and gives their records to be reviewed by a physician before being seen to see if the clinic is a good fit for them. If it is, the patient is scheduled with an appointment for each doctor and professional in the clinic.   [24:02] The patient records are seen by each professional on the team for how they relate to the professional's specialty. They decide what tests need to be done and if they are covered by insurance.    [24:27] The care team meets before clinic to talk about all new and follow-up patients. Then the patient comes in to see the providers, one after another. Patients don't see all the providers in the same order. The endocrinologist and psychologist are not in the clinic.   [25:39] The clinic visit takes three to four hours. It may involve skin testing for allergies or spirometry for lung function. The patient is scheduled for an endoscopy. When appropriate, they offer transnasal endoscopy, which takes only eight minutes and does not require anesthesia.   [27:11] If the patient has a stricture and the esophagus needs to be dilated, the patient is asleep for that. There is also the esophageal string test, developed by Dr. Furuta. It takes a little over an hour and tells whether there is active disease or not.   [28:02] Care has been made easier. Patients have different options for testing. Holly points out that the family is a part of the team and they are involved in every process and decision. Dr. Atkins says that shared decision-making is a cornerstone of care.   [29:31] Dr. Atkins says what happens in the room is the care provider and patient connect and the patient talks about their problems with somebody they trust. To get the patient to do what they need to do, they have to understand and feel understood.   [31:03] When Dr. Atkins started treating patients with asthma at National Jewish, patients came for a long evaluation, sometimes months. The only treatments were theophylline and steroids. There were side effects to those medications.   [31:39] Dr. Atkins says it has been wonderful to be involved while new treatments have evolved. For eosinophilic esophagitis, when diet works for people, it works. He shares the experience of a teen who is doing great on a diet eliminating milk and eggs.   [32:56] Don't discount diet. It's still up front. On the other hand, that doesn't work for some people. A metered dose inhaler with the puff swallowed may work for some. That's ideal for teenagers. There are other treatment choices like budesonide.   [34:14] Swallowed steroids go to the liver, where they are metabolized. Now biologics are revolutionizing treatment. Not everyone needs biologics but they're a great choice for some.   [35:30] A patient starting out doesn't need biologics as a first treatment. Other therapies may be effective and cheaper. If a patient doesn't respond, they can go to a biologic. More treatments are being developed.   [36:42] Dr. Atkins wishes for a way to determine the food trigger with a simple test.   [38:00] Dr. Altkins remembers Ryan as a little kid who should have gotten off of milk but he just wouldn't do it. He also recalls a patient who thrived when he was put on the right elimination diet, giving up only a couple of foods.   [38:33] Dr. Atkins doesn't want to diminish any of his patients. Every patient is an individual. It's so much fun working through the problems, the goal, and the adjustments to get there and how the patient is dealing with it, and then watching them do better!   [40:35] The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be lifelong. But in the lifetime of patients he is seeing now, Dr. Atkins thinks we will see a cure, or at least, much easier, better treatments.   [40:56] In the population Dr. Atkins treats, they start treatment and all of a sudden, they're not having trouble swallowing. Everyone who had a dilation said they would do it again when needed. They can swallow better.   [41:44] But then, they have to maintain control of the inflammation. When people feel better, their impetus to take the medication drops off. If they stop taking their medications, a month later, they can't swallow their bagels.   [42:18] There are holidays, such as Halloween, that are challenging for kids who are on elimination diets. If they collect candy but can't eat any of it, that may be a problem.   [42:48] People who don't have EoE don't understand not being able to swallow. Dr. Atkins sees dads who have this but don't want to go get checked out. He tells them they need to be examples for their children and go get endoscopies to know if the condition is familial.   [43:53] Dr. Atkins says there are a number of other excellent programs in the country.   [44:24] Holly thanks Dr. Dan Atkins for sharing his expertise to help others and continually teaching the medical community how to recognize eosinophilic diseases and optimize care for all patients.   [44:40] Eosinophilic diseases are not going away. Allergists need to learn the ins and outs of all different eosinophilic disorders. The medications available to treat those disorders are increasing.    [45:02] Early in your career as an allergist, learn as much immunology as you can and how the biologics work and the newer medications coming out. Follow side effects so you know what to say to your patients and what to look for.   [45:20] A lot of EoE patients get picked up in the allergist's office because they have other allergic diseases. As an allergist, ask if the child or parent eats slower than everybody else.   [45:57] Ryan thanks Dr. Dan Atkins for joining today and personally, for all he has done to treat Ryan over the years. He thanks Dr. Atkins on behalf of APFED and for being instrumental in many APFED conferences and educational materials.   [46:30] Dr. Atkins's biggest hope is that people sort out the pathways that lead to eosinophilic esophagitis and that we will have an array of targeted treatments for individual patients to cure that disorder for that patient without side effects.   [47:50] Dr. Atkins thanks Ryan and Holly again for the opportunity to join them. It's been such a pleasure. He thanks APFED again. He has been a big fan for years. Giving patients a voice to share their stories is incredibly important.   [47:34] For our listeners who would like to learn more about eosinophilic disorders, please visit APFED.org and check out the links below.   [47:41] If you're looking to find a specialist who treats eosinophilic disorders, you can use APFED's Specialist Finder at APFED.org/specialist.   [47:51] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections/.   [48:07] Holly thanks Dan and also thanks APFED's Education Partner Bristol Myers Squibb, GSK, Sanofi, and Regeneron, who supported this episode.   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   APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.   Tweetables:   “I loved helping patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. You could take these kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well.” — Dr. Dan Atkins   “With patients who have allergic rhinitis, we tend to be more aggressive with using a topical nasal steroid spray because that decreases the eosinophils in the nose.” — Dr. Dan Atkins   “We are trying to teach children to be their own advocates. … If you don't listen to what the patients have to say, why should [the patients] be involved?” — Dr. Dan Atkins   “The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be a lifelong phenomenon.” — Dr. Dan Atkins

Are you curious about how biologic medications are transforming the treatment of asthma, eczema, allergies, and more? Dr. Perdita Permaul joins Dr. Gupta and Kortney to discuss the available biologic medications for allergic conditions. We walk through the eight biologics currently available for allergic diseases, explaining how these medications target different parts of the immune system to treat allergic conditions more effectively than traditional medications. Dr. Permaul explains how biologics have evolved since 2003 and how they are changing the way allergic conditions are treated. She also explains why some of the biologics treat multiple diseases, whereas some are only approved for one.  What we cover in our episode about the available biologics for allergic conditions How biologics work for allergic conditions: We unpack how biologic medications target specific parts of the immune system, reducing inflammation and improving the quality of life for patients with allergic diseases. History and evolution of biologics: Dr. Permaul walks us through the timeline of biologics, starting with Xolair in 2003 and how these treatments have expanded to target other conditions over time. Which biologics treat which conditions: From asthma and eczema to food allergies and nasal polyps, we break down which biologics are available and how they help patients with allergic conditions. Future of biologics: Dr. Permaul discusses the potential of biologics to be used for more conditions in the future, including ongoing research into food allergy treatments. Biologics Cheat Sheet Below is a list of the 8 biologics discussed in this episode. We have briefly outlined their mechanism of action along with the approved conditions and ages the drug is available for presecription.  Omalizumab (Xolair) Xolair works by binding to IgE to prevent allergic reactions. It has since been approved for chronic hives, nasal polyps, and food allergies. Allergic asthma: 6+ Chronic idiopathic urticaria (hives: 12+ Chronic rhinosinusitis with nasal polyps (CRSwNP): 18+ Food allergies:1+ Mepolizumab (Nucala) Targets and blocks interleukin-5 (IL-5) play a key role in the activation and priming of eosinophils, a type of white blood cell that causes inflammation in asthma. Eosinophilic Asthma: 6+ CRSwNP: 18+ Eosinophilic Granulomatosis with Polyangiitis (EGPA): 18+ Hypereosinophilic Syndrome: ≥6 months Reslizumab (Cinqair) Targets and blocks interleukin-5 (IL-5). Eosinophilic asthma: 18+ Benralizumab (Fasenra) Binds to the IL-5 receptor, preventing eosinophils from growing and causing inflammation. Eosinophilic asthma: 6+ Eosinophilic Granulomatosis with Polyangiitis (EGPA): 18+ Dupilumab (Dupixent) Targets and blocks IL-4 and IL-13 to reduce inflammation Asthma: 6+ Atopic Dermatitis: 6 months+ CRSwNP: 18+ Eosinophilic Esophagitis (EoE): 1+ (> 33 lbs) Approved for prurigo nodularis (PN): 18+ Tezepelumab (Tezspire) Blocks thymic stromal lymphopoietin (TSLP). Asthma: 12+ Tralokinumab (Adbry, Adtralza) Targets and neutralizes interleukin-13 (IL-13). Atopic dermatitis: 12+ Lebrikizumab (Ebglyss) Targets and neutralizes interleukin-13 (IL-13). Atopic dermatitis: 12+ (> 40 lbs) ________ This podcast is made in partnership with The Allergy & Asthma Network. Thanks to Sanofi-Regeneron for sponsoring today's episode. While they support the show, all opinions are our own, and sponsorship doesn't influence our content or editorial decisions. Any mention of brands is for informational purposes and not an endorsement. Disclaimer: This podcast is for informational purposes only and does not substitute professional medical advice. Always consult with your healthcare provider for any medical concerns.

Description: 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, have a conversation about EOS Connection 2024, live at the conference.   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.   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. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED's annual patient education conference.   [1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder's Award. It was a joy for Mary Jo to present the award to Ryan.   [1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They've known Beth for just as long. It was perfect.   [2:23] Ryan's highlights of this year's conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers.   [3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference.   [3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE?   [3:57] Ryan also says it's interesting to hear. APFED doesn't want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else.   [4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they've lived with symptoms for years, not knowing what it was, and now have a diagnosis.   [4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis).   [5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects.   [5:59] Mary Jo found Friday's conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment.   [6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test.   [6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference.   [6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be.   [6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow.   [7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites.   [7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game.   [8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers.   [8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it's not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, “Wow, you're just like me!”   [8:46] For Ryan, it's amazing that the conference can offer that environment for everybody. Ryan says it's wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them. [9:13] Many incredible volunteers came to help; Ryan mentions some by name. It's wonderful that the conferences have been able to create such a tight-knit community for these patients. [9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well.   [9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline's advice that you may not be able to change the situation but you can change how you react to it. It's important for children to learn and adults to remember; you are not your disease.   [10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you're a kid first and then you also have to deal with allergies, medicines, and doctors' appointments.   [10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity.   [10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness.   [10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability.   [11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation.   [11:47] You can find the new EGPA Toolkit at APFED.org.   [11:59] Ryan thinks it's exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis.   [12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year.   [12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research.   [12:37] Mary Jo answers that's why we call it EOS Connection! Ryan agrees; we're making those patient connections even among these rare subsets.   [12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well. [12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit APFED.org/conference and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024.   [13:21] Ryan thanks our education partners for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event.   Mentioned in This Episode: EOS Connection 2024 Conference APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/egids apfed.org/specialist apfed.org/connections   Tweetables:   “It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities.” — Ryan Piansky   “It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having.” — Mary Jo Strobel   “We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org.” — Mary Jo Strobel   “It's exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we're able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis.” — Ryan Piansky

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). 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 and co-host Holly Knotowicz introduce the topic of today's episode, food-induced immediate response in eosinophilic esophagitis, and their guest, Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine.   [1:38] Dr. Gonsalves is the Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. Her research and clinical career are dedicated to improving the care of patients with eosinophilic gastrointestinal diseases, or EGIDs.   [1:53] Dr. Gonsalves's extensive clinical experiences with EGIDs have shaped her research goals, which include identifying novel treatments and determining the best methods to measure disease activity.   [2:20] Dr. Nirmala Gonsalves has been at Northwestern for 25 years and has been involved in the EGID and EoE space for the last 20 years. Dr. Gonsalves met Ryan during her first introduction to APFED when Ryan was “much, much younger,” so she is pleased to see him co-hosting this podcast.   [2:56] Within Northwestern Medicine, Dr. Gonsalves is part of the Esophageal Group. Within the Esophageal Group, she co-directs the Eosinophilic GI Disorders Program with Dr. Ikuo Hirano. Working in the EGID space for the last 20 years has been incredibly rewarding.   [3:11] Dr. Gonsalves feels lucky to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS) and the Consortium of Eosinophilic and Gastrointestinal Disease Researchers (CEGIR).   [3:26] Dr. Gonsalves has focused her clinical career on understanding eosinophilic GI disorders, helping to get better diagnoses, increased awareness, and better treatments, and improving the quality of life for patients with these conditions.   [4:19] Dr. Gonsalves describes the study of food-induced immediate response in eosinophilic esophagitis (FIRE). In 2017, gastroenterologist Dr. Alex Straumann, and allergist Dr. Mark Holbreich, both very familiar with EGID, started a multi-center effort and project, working with many physicians and patients to define this condition of FIRE.   [4:45] The symptoms of FIRE are very different from what we typically think about as EoE symptoms. The classic symptoms of EoE in adults are dysphagia (difficulty swallowing), or food impaction (a bolus of food stuck in the esophagus).   [5:37] This team of researchers in Switzerland, Northwestern, Indiana, North Carolina, Colorado, and Mt. Sinai, to name a few centers, noticed patients describing different symptoms; a more immediate response that was happening in their esophagus when they were exposed to certain specific foods, like beer or wine and avocado or banana.   [6:19] Patients described an immediate reaction in their esophagus, occurring any time from seconds to minutes after ingesting that food, as a painful, squeezing sensation, and a narrowing in their esophagus that was temporally related to these foods.   [6:42] It started to increase the researchers' awareness that this symptom was different from the classic dysphagia that adults and older children typically present with.   [7:12] In the study, they did a two-phased investigation. First, they sent a survey to physicians used to treating EoE, to understand what their experience was about these symptoms. Based on that knowledge, they convened twice to develop a questionnaire for patients, to understand how common this is in the patient population.   [7:38] The response was 47 physicians (an 82% response rate). They sent the patient survey to the EoE Swiss cohort and the response was 239 patients (a 65% response rate.)   [7:58] Of the physicians, 90% reported patients reporting these symptoms. The physicians estimated this to occur in 5 to 20% of EoE patients. Looking at the patients who had FIRE with EoE, vs. EoE without FIRE, the FIRE patients were younger and more likely to have other atopic conditions like rhinitis, asthma, and dermatitis.   [8:42] Patients with FIRE were more likely to have had a prior food impaction, a longer duration of disease, and a longer time to symptom presentation. Those were the risk factors in the patients.   [8:56] In the patient questionnaire, 40% of the EoE patients surveyed reported that they had symptoms of FIRE. [9:29] Most of the patients in the study were adult patients. Looking at the average age of the EoE cohort vs. the EoE with FIRE cohort, the EoE with FIRE patients tended to be younger. Dr. Gonsalves suspects that patients are experiencing FIRE earlier on, but they don't know what is occurring. [9:56] Dr. Gonsalves thinks that is where the investigation is going: to understand when FIRE is happening. The symptoms are quite different than the typical first EoE symptom when something is going down slower or getting caught in the esophagus.   [10:27] As far as whether FIRE is experienced by other patients besides EoE patients, the survey team only noticed FIRE in EoE patients. A follow-up study could look at the control cohort or the regular reflux cohort. Patients don't express these types of symptoms, other than EoE patients, so it seems unique to EoE patients.   [10:53] When the team talked about and tried to understand more about the background of FIRE, and the risk factors, they wondered if it was similar to oral pollen syndrome, with a more immediate reaction in the esophagus.   [11:49] With adults, certain liquors, wines, beers, avocados, and bananas stand out among triggers. The symptoms are so significant that patients would say on a scale of one to ten, it's a seven intensity. It's fairly immediate, within seconds to minutes, with a duration of minutes to several hours.   [12:18] A lot of times, patients compensate by not eating those specific foods because they don't want that condition to happen. For some patients, it's a profound spasm-type squeezing in their chest that will occur when this happens.   [13:44] Dr. Gonsalves says many patients will confuse FIRE with an anaphylactic reaction; it's not clear what it is. The multidisciplinary group of physicians that worked on this study included allergists and gastroenterologists all tried to come up with the mechanism that causes FIRE. It does not appear to be an anaphylactic reaction.   [14:13] When FIRE occurs, the doctors of the multidisciplinary group ask their patients to seek care from their allergist and discuss this with their allergist, to get more testing and understanding of what's occurring. They want to be mindful if there's any risk of anaphylaxis, but it does not appear that the FIRE condition is related to anaphylaxis.   [14:55] Dr. Gonsalves says we're at the very early stages of understanding the mechanisms of why FIRE is occurring. The first step was to increase awareness, define FIRE, understand it, and separate it from both EoE symptoms and anaphylaxis. We don't yet understand the mechanisms.   [15:18] At Northwestern, they are looking at a study to define FIRE better. They look to see if there is IgE sensitivity to these foods. If there are not, they look to see if there are any nanometric changes in the esophagus when these foods are in the esophagus. Are people having the esophageal spasms that equate to the symptoms they describe?   [16:03] That study is to understand more about the mechanisms causing FIRE. What happens to the FIRE symptoms? Once a physician treats a patient with EoE, the FIRE gets better. Patients sometimes can reintroduce the foods when their EoE is quiet. There is a short window of time to identify FIRE in a patient before treatment.   [16:43] Early identification and early treatment is the mantra. They don't want to delay treatment in any patient. When the EoE goes in remission from treatment, the FIRE symptoms tend to go into remission, also.   [17:01] This is unpublished data and research they are working on. Hopefully, they will learn more and be able to share it with APFED. These are their speculations.   [18:17] At Northwestern, they are known for dietary therapy. Their patients gravitate toward diet therapy. The foods involved in FIRE symptoms are not big EoE triggers. In dietary therapy, when foods are reintroduced, patients describe recurrent dysphagia, heartburn, and EoE-type symptoms.   [18:56] Patients having foods reintroduced don't typically describe this immediate reaction where their esophagus is spasming, contracting, and feeling very tight right after. That's a very different symptom.   [19:17] For the patients studied, the foods most consistently triggering FIRE symptoms were fruits, wines, vegetables, honey, beers, and vinegar. The foods driving FIRE tend to be the foods driving oral allergy but the symptoms are different; no mouth, tongue, or lip itching, but a squeezing sensation in the esophagus.   [20:29] Dr. Gonsalves says they have not identified long-term consequences of FIRE. They are very early in the stages of understanding and following it. The long-term consequences come from untreated EoE. Dr. Gonsalves lists some consequences of untreated EoE, including worsening scarring, strictures, and dysphagia.   [21:08] Dr. Gonsalves speculates and wonders if physicians were sometimes confused between dysphagia, oral-pollen allergy symptoms, and FIRE symptoms, without it being clear what the patient was experiencing, leading to a delay in diagnosis.   [21:52] Dr. Gonsalves says having patients with FIRE symptoms highlights the importance of having a multidisciplinary program and having a good collaboration with allergists, dieticians, and GI health psychologists to address food fear and anxiety, pathologists, and pediatricians. It's important to have conversations with colleagues.   [22:31] Dr. Gonsalves says there's no test for FIRE, which is why we're doing this research project; understanding what is behind FIRE, now that we know FIRE exists, we have a description, and we know how prevalent it is. We need to look at the patient and look for contractions of the esophagus upon exposure to the food with manometry.   [23:18] Manometry is a tube with pressure sensors used for measuring esophageal pressure and the strength of contractions. Patients with EoE have various abnormalities in their esophageal contractions. To study FIRE, with the manometry tube in place, the patient will eat the trigger food or drink to see if there are heightened contractions.   [25:24] Manometry is not an easy test. It is done when necessary to understand esophageal motility and function. It's not easy to recruit for these tests and there are not many candidates as the symptoms go away quickly with treatment. The technicians are skilled in doing the testing. It's done routinely and safely.   [26:47] Dietary, pharmacological, steroidal, and biological treatments can be effective in treating EoE symptoms. When EoE symptoms stop, FIRE typically stops. There has not been a study to document this, but it has been observed clinically. After a patient has been treated and then is tested for esophageal motility, FIRE does not typically recur.   [28:05] Dr. Gonsalves shares her suspicion that there is something related to esophageal inflammation that triggers this type of response and a hypercontractile state in that setting. Ryan reminds listeners that this podcast is not medical advice; always consult with your physician before making any changes or trying new treatment options.   [29:40] When a provider talks to a patient, they might ask about dysphagia if they are making modifications for swallowing, and how they swallow something dry or dense. Can they perceive it going slowly down their esophagus? Are they taking in lots of liquid to help this food pass? Are they chewing excessively? Are they avoiding foods or pills?   [30:40] These questions help providers understand if there is disease activity and if they are not symptomatic because of avoiding these types of foods. Those are EoE questions.   [30:52] Asking about FIRE symptoms or oral pollen allergy symptoms, the provider will go down a list of allergic history questions about allergic rhinitis, asthma, eczema, and anaphylactic symptoms. Also, mouth itching, lip-tingling, or throat itching when they eat certain foods.   [31:20] After they eat these foods, do they ever experience an immediate sensation of narrowing or tightening or spasm in the esophagus, or burning pain that happens secondary to the dysphagia? The important thing is to separate the transit dysphagia of things moving slower down the esophagus from this perception of squeezing pain.   [32:18] Holly thanks Dr. Gonsalves for sharing her expertise to help others.   [32:37] Dr. Gonsalves's last word is that this condition exists. Providers, ask your patients about them. It was remarkable to Dr. Gonsalves how profound the symptoms were that patients described to the point where they avoided these foods and were scared of these foods.   [32:56] Interestingly, FIRE is very different from EoE symptoms. It does exist. Ask about it! That will help tease out the reactions that are occurring. Especially, understand that when going on a food elimination diet, these are separate from the EoE triggers.   [33:18] If you identify these symptoms, or oral pollen symptoms, or coexisting atopic conditions, partner with an allergist so that we understand the mechanisms behind this and make sure that nobody is at risk for anaphylaxis from these types of things.   [33:49] Dr. Gonsalves is pleased to partner with TIGERS and to be on a site for the CEGIR Group. Dr. Gonsalves heads up the development of the Non-EoE Consensus Guidelines, to understand what goes into a diagnosis of Non-EoE EGID and what that entails. She continues to research dietary therapy and making it better for patients.   [34:31] She works to understand different metrics to measure activity in the esophagus, histologically as well as motility-based, and the genetic changes that occur with different treatments, and doing all this, partnered with an amazing group of collaborators through the CEGIR Consortium and others to improve patients' quality of life.   [35:01] Dr. Gonsalves feels lucky that 20-something years ago, she bumped into the leaders of APFED and other patient advocacy groups and shared their experience with Northwestern. She is grateful for the privilege of working with all the wonderful physicians and patients who help us learn about these conditions.   [35:46] To learn more about Dr. Gonsalves's research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you're looking for a specialist who treats eosinophilic disorders, use APFED's specialist finder at apfed.org/specialist. [36:10] To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.   [36:21] Ryan thanks Dr. Nirmala Gonsalves for joining us today. Holly thanks APFED's Education Partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.   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 esophagitisAmerican Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast apfed.org/egids apfed.org/specialist apfed.org/connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.   Tweetables:   “Working in the EGID space for the last 20 years; it's been incredibly rewarding. I've been lucky enough to be invited to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS).” — Nirmala Gonsalves, M.D.   “Our patients will describe it; it's a profound spasm-type squeezing in their chest that will occur when FIRE happens.” — Nirmala Gonsalves, M.D.   “There's no clear test yet for FIRE, which is why we're doing this research project; really understanding what is behind FIRE, now that we know FIRE exists, we have a description of it and we know how prevalent it is.” — Nirmala Gonsalves, M.D.   Bio: Dr. Gonsalves is a Professor of Medicine in the Division of Gastroenterology & Hepatology at Northwestern University Feinberg School of Medicine and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. She completed her undergraduate training at the University of Notre Dame, medical school at Robert Wood Johnson Medical School in New Jersey, and her internship, residency, and fellowship at Northwestern, where she has stayed on as an attending physician since 2005. In this role, she has co-authored more than 60 manuscripts and presented at more than 40 national or international meetings that focus on eosinophilic gastrointestinal diseases (EGIDs). Her research and clinical career is dedicated to improving the care of patients with these rare disorders. Her extensive clinical experiences with EGIDs have shaped the overarching research goals that include identifying novel treatments and determining the best methods to measure disease activity. She is a site investigator for the NIH-funded U54 Grant Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, PI-Rothenberg) and Core Lead for the Northwestern Biorepository for an NIH sponsored PPG Grant on Esophageal Biomechanics (PI-Pandolfino).

David Liew talks to gastroenterologist Varan Perananthan about his article on diagnosis and management of eosinophilic oesophagitis (EoE). Varan explains the causes and symptoms of EoE, why the prevalence has been increasing, and how to differentiate EoE from gastro-oesophageal reflux disease. Also discussed are dietary approaches for identifying food triggers and pharmacological treatments for EoE. Read the full article by Varan and his co-author, Rebecca Burgell, in Australian Prescriber.

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 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 and co-host Holly Knotowicz introduce the topic of today's episode, the Spoon Theory. Both Ryan and Holly will discuss their experiences.   [1:39] About ten years ago, fatigue became a challenge for Holly. As she researched options for managing her fatigue, Holly came across the Spoon Theory, a tool she uses and teaches now in conferences and talks.   [2:05] The Spoon Theory is a story written and copyrighted by Christine Miserandino in 2003 to help explain how chronic illness affects the amount of physical and or mental energy a person has available for daily activities and tasks and how it can be limited.   [2:28] About a year ago, in a Community Conversations episode of APFED's podcast, guest Ashley Spencer discussed EGPA. Ashley and Holly brought up the Spoon Theory. Ryan calls the Spoon Theory a digestible way to convey the effect of living with fatigue from chronic illness.   [2:46] Holly shared how Christine Miserandino developed the Spoon Theory while at brunch with a friend. Her friend asked Christine how she was coping living with lupus. Christine grabbed all the spoons from the table and explained that each task throughout the day costs a spoon.   [3:21] Christine asked her friend to walk through every activity of her morning. As her friend started talking about the different things she does, Christine would remove a spoon from her pile of 12 spoons. When dinnertime came, there was only one spoon. That limited her choices for dinner; this was long before dinner delivery services.   [4:19] Through this exercise, Christine's friend learned how chronic illnesses use up a lot of energy just from existing. For listeners who want to read more, please check out Christines' website, ButYouDontLookSick.com, linked in the show notes.   [4:33] Ryan sees the Spoon Theory as an easy way to convey what living with a chronic illness is like. He asks, why is it 12 spoons? Does everyone have the same number of spoons? In interviews, Christine has said 12 was the number of spoons on the table but it is a good representation of the limited supply people with chronic illnesses have.   [5:07] According to the theory, healthy people have an “unlimited” supply of spoons, while people with chronic illnesses have to ration their spoons to get through the day. Everybody's number is slightly different but the theory uses 12.   [5:22] Ryan shared a story about seeing his sister during the holidays. She doesn't have a chronic illness. She seems to have unlimited spoons for activities she plans, while Ryan may run out of spoons around 10:00 a.m.   [5:46] Ryan asks if it is always the same number of spoons per day. Holly says your baseline number is about 12 spoons. It can vary if you borrowed spoons from the day before or if you have spoons left over from the day before. Some say on a good day, you might wake up with 20 spoons but a bad day would start with 12 spoons.   [6:34] Holly explains about borrowing spoons. If you run out of spoons on one day, before you finish your activities, you might borrow spoons from the next day by canceling a planned activity for the next day. Holly also explains it to people as a lending library.   [7:49] When Ryan was young, he attended the APFED patient education conference every year. He recommends it. His parents warned him not to overextend himself but to take it easy and rest during the day. At every conference, he just kept going for 12-plus hours. When he got home, he would crash for a day. He had used up all his spoons!   [8:36] Ryan asks what happens when you run out of spoons. Holly shares that when you run out of spoons, your body might have a flare-up, or be more susceptible to getting sick because you've become rundown. [9:10] It can also lead to comparison with others and feeling sad or anxious because you don't have the energy that healthy people around you have. For the average person with chronic illness, cooking from scratch from a recipe could be three or four spoons. [9:51] For someone with a specialized diet, that could double. You're not just reading the recipe, you have to think about substitutions and go buy them. You have to know if the recipe will taste good with substitutions. It's mentally exhausting to follow recipes for specialized diets.   [11:04] Holly is an extrovert but sometimes being with people can take too many of her spoons, so she carefully plans her socializing. Being with good friends might take three spoons. Presenting at a conference takes more spoons. Walking a dog could take two spoons. Taking medication or brushing her teeth could take one spoon.   [12:10] For children with chronic illness, going to school might take four of their spoons. Playing soccer might take five spoons, so at times they don't have the energy. This can result in absences from school because they want to have typical social lives but don't have the energy and reserves to do so. It's the same for adults but it's a hard fact for children.   [12:53] Ryan was diagnosed with EoE at age two. Ryan thinks back to high school. He woke up at 6:15 every day to get to high school before 8:00. Getting to school on time probably took most of his spoons. The rest of the day was exhausting. He never did any extracurriculars in high school. By 3:00, he was down for the count.   [13:50] If Ryan's friends wanted to spontaneously do something after school, he often had to refuse. He needed a few days to prepare physically and mentally for extra activities. Having something sprung on him at the last minute drained more of his spoons. He would like to have had the Spoon Theory to explain it to his friends.   [14:52] Holly says there is a mental aspect to having a chronic illness. You have to think about things in advance, especially people living with eosinophilic diseases and/or those who have specialized diets. To consider going out to a meal, you might have to research a restaurant in advance or even talk to the chef. Thinking about and making these phone calls requires spoons.   [16:06] Recently Ryan planned to go out with friends. After they picked a restaurant and Ryan chose what he would order, the friends decided to try a different restaurant. Ryan had to check the menus of six other restaurants before they settled on the original one. The extra effort depleted Ryan's energy and he just sat quietly during dinner.   [19:14] Ryan didn't push himself to be social because it would have eaten into his reserve spoons for the following day. As it was, he slept in the next day.   [20:07] Ryan has had days where he has had to use up the next day's spoons, and then had the next day be equally busy.    [20:28] The Spoon Theory can be applied to different chronic illnesses. Most of them are invisible illnesses. It makes sense that Christine's website is named ButYouDontLookSick.com.   [21:29] Holly loves that the Spoon Theory provides a visual representation of how our energy works and how we can manage it. Because many chronic illnesses are invisible, people don't always understand why we have to cancel, abort, or decline plans. We often have to prioritize activities to protect our health. It's a different standard.   [22:10] We prioritize activities to protect our health and how we feel. Holly uses the Spoon Theory to explain why she declines plans in advance when she has too many things scheduled. She wouldn't be her best self. Holly rarely schedules anything for after an eight-hour workday.   [22:55] Holly thinks of herself as a dynamic person who brings a lot to the table. She doesn't want to be in an activity where she can't participate fully. It reflects on how much her diagnosis seeps into her life. She doesn't like to share her EoE with everybody, even though many people in her life know it and she does this podcast!   [23:25] Over the last six months, Holly's goal has been to map out her week to keep her energy consistent. She plans when to work out in the morning, when to see patients, and when to fly for international conferences. She gives herself a rest day after the flight or she stumbles and mumbles during the presentation. This means she often declines dinner invitations.   [24:45] Holly will accept invitations to destination weddings but then will not book anything extra for a week afterward or she knows she will get sick. It's a pattern.   [25:28] Ryan says sometimes people can tell when he's not at his best, but for the most part, he looks relatively healthy. He's up and about, at meetings and conferences but it's such a limited amount of energy that he has available. It's hard for people with unlimited spoons to gauge how many spoons Ryan has left.   [25:57] Holly often presents at medical conferences about feeding therapy, eosinophilic diseases, food allergies, FPIES, and tube feeding, and she incorporates the Spoon Theory into some of her talks. She has spoons at the podium and starts dropping them as she goes, holding one or none by the end. That's when questions come.   [27:25] Holly likes people to know that when they're working with kids with chronic illness, it's important to pace out their therapy. For example, give a patient two things to work on until the next time, not ten, to be successful.   [28:50] Ryan clusters his multiple specialist annual visits at the start of the fall semester and at the beginning of the spring semester. That means he misses some classes and lectures at the beginning of each semester. It is draining. Tests eat up half his spoons for the day.   [30:35] Holly shares how applying the Spoon Theory impacts managing her health. The Spoon Theory helps her create and maintain boundaries. She adamantly tries to stick to a schedule that rarely depletes her spoons per day. It's still a work in progress. Holly has a therapist who is helping her work on it.   [31:08] Holly schedules social things on days when she has little to no other obligations. She has to maintain that schedule. She has good days and sometimes great weeks which leads her to add more to her plate, but then she runs out of spoons more quickly because she's borrowing from the next day. Eventually, she has no spoons to borrow.   [31:42] Holly went on vacation for her birthday and then last week she was doing great, taking some urgent referrals for babies. This week, she had to cancel things. She is learning that she needs to schedule time to recharge and rest even on good days.   [32:26] Holly has learned there are ways to increase your number of spoons. The most important things are to be compliant with treatment and follow a specific diet (if recommended). A lot of chronic illnesses have a specific researched diet to help you stay healthy. When you have a cheat day, you're harming yourself by taking spoons from your next day.   [33:31] Working out helps with anxiety and depression. There are physical and mental health benefits. Holly started tracking over the last eight months how many spoons working out earned for her, compared to the spoon it took from her. She finds that it adds three to five spoons to her daily reserve. The endorphins boost her energy.   [34:14] Ryan agrees. He goes to the gym at least twice a week. If he misses a day, he feels worse. He goes out for a walk on days he's not going to the gym just to get moving and he feels better after that. Being stuck inside all day is mentally draining as well. Going for a walk takes extra effort but it does feel better.   [35:32] Ryan and his mother have similar food allergy issues so they both carefully stick to their diet. If they vary their diets on vacation, even without eating triggers or allergens, they feel physically bad for a few days until they get back to their usual diets.   [36:28] Once Holly learned about this theory and was making new contracts, she realized that there may be times when she might have to cancel and reschedule. When she sends an email about an engagement, she includes an article on the Spoon Theory and describes what she is struggling with, in case she has to reschedule.   [37:42] The Spoon Theory is a good way to describe to friends or family why the person with the chronic illness isn't hosting the holiday but may need to go to a room and rest at the host's home. It's a tool to inform loved ones and friends so they can be supportive. It's a different way to share our struggles with our chronic illness. [38:27] When Ryan meets people and tells them about his health issues, he might say he has food allergies but then also explain how his conditions lead to a limited supply of energy, and then tell about the Spoon Theory. It's a helpful tool we can all use, going forward.   [39:08] Our listeners can learn more about the Spoon Theory by going to Christine Miserandino's website, ButYouDontLookSick.com.    [39:47] To learn more about eosinophilic disorders, visit APFED.org. If you're looking for a specialist who treats eosinophilic disorders, use APFED's specialist finder at APFED.org/Specialist. [40:05] To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/Connections.   [40:14] Ryan thanks Holly for sharing information about the Spoon Theory. It means a lot to Holly that we have a platform to reach a lot of people. Holly hopes if you are struggling with a chronic illness that you are not alone and you can use this tool to bring your loved ones and friends closer. Maybe weed out the people who aren't helping.   [41:15] Holly thanks APFED's education partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.   [41:26] Ryan shares how he just met his partner's friend and by discussing symptoms while picking a place to eat, it turns out she was diagnosed last year with EoE. It's unusual for him to meet people with EoE out there randomly. Ryan is glad to be creating this resource for people. Holly agrees 1,000%.   Mentioned in This Episode: Christine Miserandino ButYouDontLookSick.comAmerican Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast APFED.org/Specialist APFED.org/Connections   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.   Tweetables:   “Approximately 10 years ago, fatigue became a real challenge for me and as I researched options on how to manage fatigue, I came across the spoon theory, which is what we're going to specifically discuss today.” — Holly Knotowicz   “[The Spoon Theory] is such an interesting story and it feels like such an easy way to convey what living with a chronic illness is like.” — Ryan Piansky “We all have people in our lives whom we love dearly, but they could maybe be taking too many of our spoons, so you have to be thoughtful about when you plan time with them.” — Holly Knotowicz  

In this episode of Better Edge, a Northwestern Medicine podcast for physicians, we are joined by Nirmala Gonsalves, MD, professor of Gastroenterology and Hepatology at Northwestern Medicine. She delves into the world of eosinophilic gastrointestinal disorders, discussing crucial aspects of diagnosis, treatment and patient care. Dr. Gonsalves shares her extensive experience and research in the field, emphasizing the importance of early diagnosis and treatment, and highlighting the exciting advances and clinical trials in the area.

Eosinophilic esophagitis (EOE) is a tricky condition to treat. The symptoms mimic other more common GI conditions, so it may go underrecognized. Plus, the steps to achieving remission can be complicated and confusing for patients. That's where a skilled and savvy dietitian can help! In this episode, Sara Glanz, MS, RD, LD, CNSC gives you a crash course on EOE so you can be ready the next time this condition walks through your door.  Show Notes:   Molina-Infante J, Arias A, Alcedo J, et al. Step-up empiric elimination diet for pediatric and adult eosinophilic esophagitis: The 2-4-6 study. J Allergy Clin Immunol. 2018;141(4):1365-72.​  Molina-Infante J, Lucendo AJ. Dietary therapy for eosinophilic esophagitis. Journal of Allergy and Clinical Immunology (2018), doi: 10.1016/j.jaci.2018.02.028.  Dellon ES, Liacouras CA, Molina-Infante J, et al. Updated international consensus diagnostic criteria for eosinophilic esophagitis: Proceedings of the AGREE conference. Gastroenterology. 2018;155(4):1022-1033.   Surdea-Blaga T, Popovici E, Stanculete MF, et al. Eosinophilic esophagitis: diagnosis and current management. J Gastrointestin Liver Dis. 2020;26(1):85-97. 

#414: It's not uncommon for infants or toddlers to refuse food. Food refusal can be due to illness, tiredness, your baby's temperament on that day…but, there is a disease that results in food refusal called Eosinophilic esophagitis or EOE. EOE is a chronic, allergic inflammatory disease of the esophagus that causes damage that makes it difficult and uncomfortable for the baby or toddler to eat which in turn results in poor growth, chronic pain and/or difficulty swallowing. The symptoms of EOE are sometimes confused with reflux and in this episode Dr. Antonella Cianferoni, MD, PhD explains what EOE is…why it sometimes gets confused with REFLUX, how it's treated as an allergic disease….and I think you'll be surprised because the treatment and certainly the diagnosis is quite different than the other allergic diseases we've covered here on the podcast. CHOP's Center for Eosinophilic Disorders: https://www.chop.edu/centers-programs/center-pediatric-eosinophilic-disorders  American Partnership for Eosinophilic Disorders (APFED): https://apfed.org/about-ead/egids/eoe/ Shownotes for this episode are here: https://blwpodcast.com/414 

#414: It's not uncommon for infants or toddlers to refuse food. Food refusal can be due to illness, tiredness, your baby's temperament on that day…but, there is a disease that results in food refusal called Eosinophilic esophagitis or EOE. EOE is a chronic, allergic inflammatory disease of the esophagus that causes damage that makes it difficult and uncomfortable for the baby or toddler to eat which in turn results in poor growth, chronic pain and/or difficulty swallowing. The symptoms of EOE are sometimes confused with reflux and in this episode Dr. Antonella Cianferoni, MD, PhD explains what EOE is…why it sometimes gets confused with REFLUX, how it's treated as an allergic disease….and I think you'll be surprised because the treatment and certainly the diagnosis is quite different than the other allergic diseases we've covered here on the podcast. CHOP's Center for Eosinophilic Disorders: https://www.chop.edu/centers-programs/center-pediatric-eosinophilic-disorders  American Partnership for Eosinophilic Disorders (APFED): https://apfed.org/about-ead/egids/eoe/ Shownotes for this episode are here: https://blwpodcast.com/414 

In this episode of the Pediatric and Developmental Pathology, our hosts Drs. Mike Arnold (@MArnold_PedPath) and Dr. Jason Wang speak with Drs. Nicoleta Arva, Maria Pletneva and Margaret Collins about their work in eosinophilic gastrointestinal disorders with the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGiR), and their article in Pediatric and Developmental Pathology: Eosinophilic Gastrointestinal Disorders: A New Path   Featured public domain music: Summer Pride by Loyalty Freak

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 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. 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 welcomes co-host Mary Jo Strobel. Mary Jo introduces Dr. Kathryn Peterson, a Professor of Gastroenterology at the University of Utah Health. Dr. Peterson specializes in diagnosing and treating diseases of the digestive system including eosinophilic esophagitis (EoE), Barrett's esophagus, and inflammatory bowel disease.   [2:00] Dr. Peterson works at the University of Utah in Salt Lake City. She co-directs an eosinophilic gastrointestinal disease clinic with Dr. Amiko Uchida. They also work closely with allergy, nutrition, and pharmacy in the clinic and are looking for additional ancillary services to come into the clinic.   [2:27] Dr. Peterson takes care of all sorts of eosinophilic gastrointestinal diseases. She works closely with Dr. Gerald Gleich, as well. Dr. Peterson is a mother of a boy living with eosinophilic disease for 10 years, so she experiences both sides of eosinophilic diseases. She loves her job.   [3:23] Familial risk refers to the risk of the disease in a patient when a family member is affected, compared to the general population. Looking at a proband (patient), is a first-degree family member (parent, sibling, or child) also affected with eosinophilic disease? Is a second-degree family member (grandparent) affected? Are cousins?   [3:58] Dr. Peterson's is trying to see if and how far out the risk for the disease goes within a family. Based on that, you can get an idea if some shared genes are involved, vs. shared environmental influence of the disease within family members. That's the idea of doing family risk studies in complex diseases; eosinophilic diseases are very complex.   [4:44] Dr. Peterson explains how she conducts a family risk study in Utah. The Utah Population Database is very helpful. The University of Utah has partnered with The Church of Jesus Christ of Latter-day Saints for large genealogical pedigrees that allow tracking disease through expanded pedigrees, with privacy and security limitations.   [5:24] It's necessary to clarify physician coding to make sure it's realistic and coded appropriately so that results are believable. It's very hard to recruit family members. Dr. Peterson feels extremely blessed to live in that area. The families are generous and giving. She also believes all eosinophilic families are generous.   [6:34] The farther out you can identify the risk for disease, the more likely you will find a common gene that could be implicated in disease risk or onset. If the disease is tracked in extended relatives, it implies a shared gene more than a shared environmental risk. If the disease is isolated within nuclear families, it may indicate an environmental risk.   [7:39] In doing familial research, Dr. Peterson is trying to develop a risk score. People are getting pretty good at diagnosing EoE, but Dr. Peterson would not say that the non-EoE EGIDs are well-established or well-diagnosed. They are missed commonly and often. To have a risk score from the extent of the disease in a family is helpful.    [8:12] Dr. Peterson notes that studies of cancer risk in extended families have established cancer risk scores and related screening that is needed.   [8:43] Dr. Peterson coauthored a paper in November 2020 about the familial risk of EoE, published in the Clinical Gastroenterology and Hepatology Journal. She and her colleagues looked at nuclear families. They were looking for how many members of the nuclear family of an EoE patient have esophageal eosinophilia. [9:28] They used a questionnaire on allergies, food allergies, and symptoms. They pulled in around 70 first-degree family members and scoped them for eosinophilia, pulled the records on the rest of the family members if they had been scoped, and assessed the risk for eosinophilia.   [9:51] Including the records, and assuming that everyone who hadn't had an endoscopy was negative, they found the risk for esophageal eosinophilia in first-degree family members was 14%, bordering on the familial risk for celiac disease. It's probably higher since they assumed anyone who hadn't been scoped didn't have eosinophilia.   [10:19] They called it esophageal eosinophilia, because the guidelines for diagnosing EoE suggest that the patient must complain of symptoms, and these family members did not have symptoms. It was interesting to find this high prevalence of eosinophilia in the nuclear family members of EoE patients. They had a higher risk of allergy, as well.   [11:14] Dr. Peterson explains the differences between esophageal eosinophilia and eosinophilic esophagitis (EoE). Esophageal eosinophilia means eosinophils are in the esophagus, >15 per high-power field in a biopsy. That could qualify as EoE when you go through the criteria of symptoms.   [12:19] We call it esophageal eosinophilia while we rule out everything else that could cause that cell to get recruited into the esophagus. It could be an allergic reaction to a medication, larger eosinophilic disorders, or parasitic infections. Esophageal eosinophilia means you had that initial biopsy that puts you at risk for EoE.   [13:06] You have to go down the diagnostic steps: Do I have symptoms? Do I have anything else that explains it? If you have nothing else that explains the eosinophils, and you have esophageal dysfunction, then you can call it EoE.   [13:33] Dr. Peterson, speaking personally, believes that educating doctors to ask patients about EoE symptoms would be useful in diagnosing EoE. People cope. You don't want to focus on your symptoms because you want to be able to focus on your life. If symptoms aren't brought to a doctor's attention, a diagnosis can get missed.   [16:47] Dr. Peterson discusses risks for EoE in families where allergies are present. Dr. Peterson is involved currently in another familial study to find more information about the risk of EoE where there are allergies in a family. In the preliminary data, it looks like there is a link with asthma. Asthma and EoE in a family seem to track together.   [17:31] The risk of EoE seems to be higher with additional allergies within a family. Dr. Peterson says they are cleaning up the data to get a better answer. It appears that allergies in general go along with some of the genes that have been identified in EoE. Watch for Dr. Peterson's papers going forward!   [19:05] They looked at around 300 eosinophilic gastroenteritis (EGE) patients and about 170 eosinophilic colitis (EoC) patients. If you have a proband with EoE, is there a higher family risk of having EGE or EoC? It looks like EoE puts you at higher risk of these other conditions. But with such low numbers in the study, the jury is still out.   [20:37] They looked at EGE codes because there is a subset of patients who have eosinophilic disease in their stomach and small bowel who don't have EoE. They found that in patients who have eosinophilic disease in the stomach or the small bowel, EoE is still commonly seen throughout families. EoE seems to be a common theme.   [21:54] Down the road, Dr. Peterson hopes to be able to identify enough families that they might be able to start looking at genes that might put people at risk for more extensive disease.   [23:07] Dr. Peterson discusses the difficulty in diagnosing eosinophilic colitis, inflammatory bowel disorder, and other disorders. Having eosinophils does not categorize you as an EGID patient. There are other disorders where eosinophils are present. We need a better understanding of eosinophilic colitis.   [25:21] Eosinophilic asthma and eosinophilic fasciitis are disorders that Dr. Peterson has not studied but are in the Institutional Review Board approved documentation for future study.   [26:18] Dr. Peterson addresses whether your degree of risk for an EGID increases if you have an immediate family member with an EGID, vs. a second cousin with an EGID. She would say yes, based on the hazard ratios in the data and knowing that eosinophilic disorders are complex and twin studies show an environmental influence.   [27:28] Dr. Peterson asks patients about their family history, especially when they have other symptoms besides EoE. It makes her more aware of what to test.   [29:10] A paper Dr. Peterson is about to submit studied family members who weren't affected, who were siblings of probands. Their mucosa wasn't entirely normal. They may be pre-diagnostic. These are patients who need to be followed. There may be things that set people up for the development of this disease, in the right environment.   [31:04] Something fascinating from the familial study is the challenge of diagnosing EGIDs. Fifty percent of the people they brought in hadn't had an endoscopy. We need to be proactive in identifying diseases in patients. In the study, there are a lot of general GI symptoms coded that Dr. Peterson wonders if they may be missed EGIDs.   [32:34] The NIH gave Dr. Peterson's team funding and they were able to do linkage analysis on several de-identified families that were at high risk for EGIDs. It looks like multiple genes have the potential to be involved. Personalizing medicine would be applicable if there were just one specific gene involved.   [33:23] Down the road, we may find some genes that portend higher risk and other genes that portend risk where we can do preventative environmental care. We can develop risk scores to identify risks and point to interventions.   [34:10] Mary Jo thanks Dr. Peterson for joining us today to share her expertise and help us learn and understand.   [34:36] Future research needs to be done where we are able to recruit patients and do more work looking at genetic linkage and get to the point where we can diagnose and identify non-EoE EGIDs well enough to explore them more, including eosinophilic colitis. Defining those diseases is necessary and needed.   [35:16] A lot of what Dr. Peterson is trying to do is to look further into combined diseases and hypereosinophilic states to determine if there is some gene within families that may help her to develop other therapies not focusing only on the GI tract but on a global approach to health for these patients.   [35:48] There is current research being done to find less invasive ways of identifying disease, such as imaging, so people don't have to undergo endoscopy. That research is being done on the commercial side.   [36:44] Dr. Peterson has been looking at food-specific antibodies. Also, research by other doctors is being done to identify other markers of the foods that often trigger the disease. There has been some interesting preliminary data. This can help patients to eliminate fewer foods.   [37:27] Dr. Peterson has been looking at less invasive ways to identify non-EoE EGIDs in ways that can avoid biopsy.   [38:04] What's being done to study Barrett's esophagus? Dr. Peterson speaks of past and planned research, using the Utah population database. They looked at the risk for Barrett's esophagus in patients with EoE and it was eight times higher than the normal population. Dr. Peterson correlates risks with reflux for Barrett's and EoE.   [39:26] There are still questions about which comes first, EoE, Barret's esophagus, or reflux. She also talks about the relationship between achalasia, allergic diseases, and EoE.   [41:05] To learn more about Dr. Peterson's research, please see the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, please visit apfed.org/egids.   [41:29] To find a specialist, visit apfed.org/specialists. To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.   [41:48] Ryan and Mary Jo thank Dr. Kathryn Peterson again for joining them. Mary Jo thanks APFED's education partners, linked below, for supporting this episode.   Mentioned in This Episode: Kathryn A. Peterson, M.D. Pubmed.ncbi.nlm.nih.gov/36148824/ (to release February 2024) Pubmed.ncbi.nlm.nih.gov/33221551/ (published November 2020) University of Utah Health American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.   Tweetables:   “When we study familial risk, we're looking at the risk of the disease in a patient when a family member is affected, compared to the general population.” — Dr. Kathryn Peterson   “I think allergies, in general, kind of go along with some of the genes that have been identified in EoE.” — Dr. Kathryn Peterson   “Fifty percent of the people we brought in [to this familial risk study] hadn't had an endoscopy. We need to be proactive in identifying diseases in patients.” — Dr. Kathryn Peterson   About Dr. Kathryn Peterson Kathryn Peterson, MD is a Professor of Gastroenterology at the University of Utah Health. She is certified by the American Board of Internal Medicine.   Dr. Peterson specializes in diagnosing and treating diseases of the digestive system including eosinophilic esophagitis, Barrett's esophagus, and inflammatory bowel disease. She completed her medical degree at the University of Texas Southwestern, followed by residency and a fellowship at the University of Utah and a master's program in Epidemiology at Harvard University.   Bio: Healthcare.utah.edu/find-a-doctor/kathryn-peterson    .  

This week we get to hear from Celeste Noland! She is the creator and recipe developer at There Is Life After Wheat. Her husband was diagnosed with Eosinophilic esophagitis and quickly learned that wheat was a trigger food for him. She was determined to make everything taste good for him so he didn't feel like he was missing out on anything, especially bread! Enjoy our chat and check out all the links below!Website: https://thereislifeafterwheat.com/Course: https://tinyurl.com/glutenfreeuCookbook: https://a.co/d/3Fs6uetInstagram: https://www.instagram.com/lifeafterwheat/

Please visit answersincme.com/TXC860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, an expert in pulmonology discusses the unmet therapeutic needs in patients with chronic obstructive pulmonary disease (COPD) and the rationale for targeting Type 2 inflammation. Upon completion of this activity, participants should be better able to: Recognize the unmet therapeutic needs in patients with COPD; Identify patients with COPD who are at high risk of exacerbations despite receiving standard therapies; and Recognize the rationale for targeting Type 2 inflammation for the treatment of COPD.

Please visit answersincme.com/TXC860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, an expert in pulmonology discusses the unmet therapeutic needs in patients with chronic obstructive pulmonary disease (COPD) and the rationale for targeting Type 2 inflammation. Upon completion of this activity, participants should be better able to: Recognize the unmet therapeutic needs in patients with COPD; Identify patients with COPD who are at high risk of exacerbations despite receiving standard therapies; and Recognize the rationale for targeting Type 2 inflammation for the treatment of COPD.

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 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. 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 welcomes co-host Holly Knotowicz. Holly introduces Moises Velasquez-Manoff, a health and science writer living with eosinophilic esophagitis (EoE). He recently wrote  an article that was published in NY Times Magazine entitled, “The Mystery of My Burning Esophagus,” in which he documented his journey and diagnosis of EoE.   [1:51] Eosinophilic esophagitis (EoE) is a rare chronic allergic inflammatory disease of the esophagus. It is part of a complex group of diseases known as eosinophilic gastrointestinal disorders or EGIDs.   [2:05] Approximately one out of 2,000 people of all ages and ethnic backgrounds [in the U.S] are diagnosed with EoE, and people with EoE commonly have other allergic diseases, such as rhinitis, asthma, or eczema.   [2:20] Moises has had asthma for as long as he can remember. It was worse when he was a child and he sort of grew out of it. In adulthood, it was exercise-induced asthma. He has been allergic to sesame and peanuts for his whole life. They make him vomit. He has had eczema, hay fever, and alopecia areata. [3:43] Moises has had problems with his esophagus since his 20s. He is 49 now and only got diagnosed with EoE about two years ago after his burning pain became very bad. It took about a year to rule out reflux, first by using high-dose proton pump inhibitors (PPIs). While on the medication, he still felt the horrible burning pain. He also had unusually bad side effects from the PPIs.   [5:25] After eight weeks of PPIs, an endoscopy showed his symptoms were almost gone. Moises believed he had reflux, but he still had the burning. His gastroenterologist suggested an alternative diagnosis, esophageal hypersensitivity, a pain syndrome from years of inflammation.    [8:21] Moises went to a second doctor who was an expert on EoE. They did a series of tests to rule out reflux. He did the Bravo PH test or reflux, a peristalsis test, a tube that was left in for 48 hours, and a barium swallow test. Each test was uncomfortable. These tests ruled out reflux.   [12:11] The doctor then believed it was esophageal hypersensitivity. The treatment was Cymbalta, an anti-depressant that also dampens pain signals. Moises was able to start eating again and started putting on weight that he had lost. A year after he stopped taking the PPIs, an endoscopy gave him the diagnosis of EoE.   [15:48] Reading Moises's article triggered many memories and emotions for Holly. She experienced symptoms since she was a baby and saw around 13 specialists before she received a diagnosis of EoE in her early 20s. By that time her eosinophil levels were out of control and her esophagus was so rigid she needed several dilations. [18:01] Moises had seen a gastroenterologist for reflux years ago and then two more doctors to get his EoE diagnosis. It was extreme pain that influenced him to seek the diagnosis. He also saw an ENT about sinus headaches, and he believes they were related to his EoE. He finally went to a doctor that specializes in EoE, just in case.   [23:08] Today, Moises manages his EoE with an off-label use of the asthma medicine budesonide taken twice a day. He mixes the solution into honey and drinks it, the honey helps the medicine stick to his esophagus. Moises worries about potential side effects as it is a steroid but at small doses.   [25:32] Ryan has taken the systemic steroids hydrocortisone and prednisone, as topical steroids were not effective for him. He was also on a restricted diet throughout his childhood. The diets didn't clear up his EoE; the only thing that helped was high-dose steroids until he began taking a biologic after being diagnosed with eosinophilic asthma.    [28:56] The treatment Moises is taking for EoE is localized. There shouldn't be any systemic effect. He believes if he took a biologic, he may see improvements in his other allergic conditions, such as eczema and his sinus condition.   [27:17] When his esophageal burning feeling was at its worst, Moises felt like he was suffocating. Doctors couldn't explain it to him, but a research scientist told him that sometimes problems in one internal organ, like the esophagus, can confuse the brain stem, so it reads the problem as coming from another organ, like the lungs or the heart.   [29:23] What helped with Moises's gasping attacks was the neuromodulating medicine, the anti-depressant, which changed how the nervous system perceives what's happening, lowered the ability for pain signals to be transmitted, and calmed his nerves.   [30:53] Ryan talks about drugs being prescribed off-label when there is anecdotal evidence that they can improve symptoms of other disorders. Some EoE patients use the asthma medicine budesonide as a topical treatment of the esophagus. It is mixed into a slurry with Splenda and swallowed. Dupilumab was originally approved to treat eczema and has recently been approved to treat EoE.   [31:40] Ryan is on benralizumab, a biologic, for eosinophilic asthma but as a side effect, it has also been  helping his EoE. He doesn't need systemic steroids anymore for his EoE. After seeing positive benefits from the biologic, he weaned off the steroids. His parents, who are doctors and involved in APFED, helped him through the process.   [34:40] Moises tells how he came to write the article for New York Times Magazine. While he was suffering, he was not considering writing about it. When he finally got his diagnosis and was feeling better, he read an article another science writer published about their journey with a pain condition and was inspired to help other people by writing about his own journey. His first draft  was more intense than the finished piece.   [37:09] Holly describes the article as very powerful. She felt she was going through it with Moises. She could feel what he was describing as he searched for answers. She appreciates him writing it. Moises says people have written to him from around the world that related to his story.   [40:43] Some even asked Moises about where they could find an EoE specialists, and Ryan mentions APFED's Specialist Finder. To find a specialist who treats eosinophilic disorders, go to APFED.org/specialists. Also, please check out Moises's article in these show notes.   [41:19] As a science writer, Moises has written a lot about the microbiome and its relationship to allergic disease and autoimmune disease before he noticed that this was happening to him. He had written a book, An Epidemic of Absence, 11 years ago about the root cause of these debilitating disorders and why allergies are increasing.   [42:51] Moises believes that the human microbiome has been impoverished by our modern environment and diets and that has led to an increased risk of allergic conditions. Moises gives the example of European farmers, who live in a rich microbial environment and have fewer allergic and autoimmune conditions.   [44:39] Moises says the research also shows that antibiotics early in life increase the risk of asthma, EoE, inflammatory bowel disease, and colon cancer. The more you take, the greater your risk. They have done research with animals, knocking out key microbes and seeing an increase in these diseases.   [45:33] H. Pylori is associated with ulcers and stomach cancer, but everyone used to have it, and it is common in the developing world. Research indicates that h. pylori changes how your immune system works. Unless you kill it with antibiotics, you have it for the rest of your life. If you have h. pylori, your EoE risk goes down.   [46:32] If you are breastfed, that also reduces your risk of EoE. Breastfeeding is thought to cultivate a healthy colony of microbes in the infant's gut. Moises credits the microbial deprivation hypothesis for the increase of allergies and autoimmune disorders. There won't be a treatment for microbial deprivation anytime soon.   [47:18] Holly and Ryan thank Moises Velasquez-Manoff for coming on the podcast and allowing them to interview him today about his patient experience and background. Moises thinks it's crazy how much good evidence there is that EoE has increased in prevalence. Unpublished results show that EoE incidence is approaching 1 in 1,000.   [48:45] To learn more about eosinophilic esophagitis, visit apfed.org/eoe. To find a specialist, visit apfed.org/specialists. Ryan recommends reading Moises's article. To connect with others impacted by eosinophilic diseases, join APFED's online community on the Inspire Network at apfed.org/connections.   [49:13] Ryan and Holly thank Moises Velasquez-Manoff again for joining them and invite listeners to read Moises's article. They close by thanking APFED's education partners, linked below, for supporting this episode.   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 American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.   Tweetables: “I have had problems with my esophagus probably since my 20s but I only got diagnosed [with EoE] about two years ago after things started getting really bad.” — Moises Velasquez-Manoff   “I could not tolerate the PPIs, even though they worked very well to lower my eosinophil counts. But I could not handle the side effects. So we moved to swallowed budesonide slurry. … an off-label treatment.” — Moises Velasquez-Manoff   “Science takes a long time, sometimes.” — Moises Velasquez-Manoff   About Moises Velasquez-Manoff Moises Velasquez-Manoff is a contributing writer for The New York Times Magazine and author of An Epidemic of Absence: A New Way Of Understanding Allergies And Autoimmune Diseases. He's written a lot about the human microbiome and its impact on health, as well as climate, COVID-19, and other health and science topics. He lives in California. Website: Moisesvm.com NYT Magazine article: “The Mystery of My Burning Esophagus”

Eosinophilic esophagitis --- Send in a voice message: https://podcasters.spotify.com/pod/show/tyler-paul-wolfe/message Support this podcast: https://podcasters.spotify.com/pod/show/tyler-paul-wolfe/support

CardioNerds (Daniel Ambinder) joins Dr. Priyanka Ghosh and Dr. Ahmad Lone from the Guthrie Robert Packer Hospital for a day in the Finger Lakes region of New York. They discuss the following case. A 35-year-old man with nonspecific symptoms of headache, fatigue, and chest wall pain was found to have elevated troponin levels, elevated inflammatory markers, EKG with inferior and anterolateral ST depressions, and no obstructive coronary artery disease on cardiac catheterization. His peripheral eosinophilia, cardiac MRI results, and bone marrow biopsy revealed eosinophilic myocarditis from acute leukemia with eosinophilia. This episode discusses this rare type of myocardial inflammation, its potential causes, and the diagnostic workup with the mention of how this patient was ultimately treated for his acute leukemia and myocarditis. Expert commentary is provided by Dr. Saurabh Sharma. Audio editing by CardioNerds academy intern, student doctor Pace Wetstein. US Cardiology Review is now the official journal of CardioNerds! Submit your manuscript here. CardioNerds Case Reports PageCardioNerds Episode PageCardioNerds AcademyCardionerds Healy Honor Roll CardioNerds Journal ClubSubscribe to The Heartbeat Newsletter!Check out CardioNerds SWAG!Become a CardioNerds Patron! Case Media - Guthrie Robert Packer Hospital Pearls - Guthrie Robert Packer Hospital Myocarditis, especially eosinophilic myocarditis, requires a high level of clinical suspicion. Eosinophilic myocarditis should be considered in a patient presenting with chest pain, normal coronary arteries, and pronounced eosinophilia levels. Causes of eosinophilic myocarditis can vary, and diagnosis requires a thorough, detailed history, which cannot be determined many times. Treatment of eosinophilic myocarditis focuses on the underlying etiology, acute management, and therapy for concomitant heart failure or cardiomyopathy. Consider the whole-patient and cardiac manifestations of non-cardiac illnesses. Show Notes - Guthrie Robert Packer Hospital What is eosinophilic myocarditis? Eosinophilic myocarditis is a type of myocardial inflammation involving eosinophilic cell infiltration and an entity that is likely under-recognized. It requires a high level of suspicion as, many times, patients may not initially present with peripheral eosinophilia, which may develop over the course of their disease process. The presentation can vary from mild cardiac injury to fulminant cardiogenic shock depending on the degree of infiltration and concurrent other organ involvement. The presentation can include heart failure symptoms as well as electrical conduction abnormalities. How is eosinophilic myocarditis diagnosed? Eosinophilic myocarditis is diagnosed by a thorough history including new medications, exposures, travel, prior allergy history, physical exam, lab work including a complete blood count differential, inflammatory markers, cardiac biomarkers, and cardiac diagnostics which should include a 12-lead ECG and transthoracic echocardiogram as well as potentially cardiac MRI and/or endomyocardial biopsy. What are the causes of eosinophilic myocarditis? The causes of eosinophilic myocarditis include medication-induced, hypersensitivity reactions, infections, malignancy, and immune-mediated disorders such as eosinophilic granulomatosis with polyangiitis and hypereosinophilic syndromes. The hypersensitivity subtype has been reported to be the most common cause. Potential offending medications can include antibiotics, sulfonamides, anticonvulsants, anti-inflammatory medications, and diuretics. What is the treatment for eosinophilic myocarditis? Treatment for eosinophilic myocarditis is multi-faceted, including focusing on the etiology and withdrawal of any potential offending agents, management of the acute clinical presentation, and treatment of any concomitant heart failure or cardiomyopathy.

Dr. Hattori Koki discusses the results of his study, "Interstitial Eosinophilic Aggregates and Kidney Outcome in Patients with CKD," on behalf of his colleagues.

Go online to PeerView.com/BJF860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is a chronic allergic type 2 inflammatory disease that is triggered by food and/or environmental allergens. It is characterized by a clinical and pathologic phenotype of progressive esophageal dysfunction due to tissue inflammation and fibrosis. EoE affects about 1 in 2,000 people in the United States, and its prevalence is increasing. Until recently, there were no FDA-approved therapies, and management was limited to dietary approaches, drugs such as proton pump inhibitors and topical corticosteroids, and esophageal dilation. Targeted biologic therapies, some of which are already approved for other type 2 inflammatory disorders, are now available or are in development for the treatment of EoE. A recent PeerView live event helped to prepare clinicians to appropriately use these agents and offered a patient perspective on disease burden, the disconnect between symptoms and disease activity, and the need for continuous monitoring and maintenance treatment. The expert faculty offered recommendations for pediatric patient populations and told the “Story Behind the Science,” adding meaning to the data. If you couldn't attend the live event, check out this on-demand version now! Upon completion of this activity, participants should be better able to: Discuss the burden of eosinophilic esophagitis (EoE) on patient/caregiver quality of life, the progressive nature of the disease, and the need for continuous monitoring and treatment, thereby improving the standard of care; Recognize the role of underlying type 2 inflammation in the development and progression of EoE and describe the rationale for targeted treatment, particularly when type 2 comorbidities are present; and Employ the latest expert recommendations and clinical evidence to treat patients with EoE, including pediatric populations, using a shared decision-making approach.

Go online to PeerView.com/BJF860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is a chronic allergic type 2 inflammatory disease that is triggered by food and/or environmental allergens. It is characterized by a clinical and pathologic phenotype of progressive esophageal dysfunction due to tissue inflammation and fibrosis. EoE affects about 1 in 2,000 people in the United States, and its prevalence is increasing. Until recently, there were no FDA-approved therapies, and management was limited to dietary approaches, drugs such as proton pump inhibitors and topical corticosteroids, and esophageal dilation. Targeted biologic therapies, some of which are already approved for other type 2 inflammatory disorders, are now available or are in development for the treatment of EoE. A recent PeerView live event helped to prepare clinicians to appropriately use these agents and offered a patient perspective on disease burden, the disconnect between symptoms and disease activity, and the need for continuous monitoring and maintenance treatment. The expert faculty offered recommendations for pediatric patient populations and told the “Story Behind the Science,” adding meaning to the data. If you couldn't attend the live event, check out this on-demand version now! Upon completion of this activity, participants should be better able to: Discuss the burden of eosinophilic esophagitis (EoE) on patient/caregiver quality of life, the progressive nature of the disease, and the need for continuous monitoring and treatment, thereby improving the standard of care; Recognize the role of underlying type 2 inflammation in the development and progression of EoE and describe the rationale for targeted treatment, particularly when type 2 comorbidities are present; and Employ the latest expert recommendations and clinical evidence to treat patients with EoE, including pediatric populations, using a shared decision-making approach.

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, 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.   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 welcomes co-host Mary Jo Strobel. Mary Jo introduces Dr. Jenny Huang, an allergy and immunology fellow at Scripps Clinic living with eosinophilic gastritis (EoG). Dr. Huang is passionate about gastrointestinal disorders and spreading awareness about EGID. She recently published a commentary about her experiences.   [2:20] Dr. Huang explains that eosinophilic gastrointestinal disorders (EGIDs) are diseases of the GI tract that result from eosinophils, a type of white blood cell causing inflammation. Depending on where the eosinophilic inflammation occurs, you can have different symptoms.   [2:43] The role of the esophagus is to get food from the mouth to the stomach. When there is eosinophilic inflammation, you have eosinophilic esophagitis (EoE) that can cause difficulty swallowing or food getting stuck. If you have inflammation in the stomach, that is eosinophilic gastritis (EoG). This can cause abdominal pain or nausea.   [3:31] Dr. Huang is an allergy and immunology fellow. She trained in internal medicine. Even in medical school, she knew she wanted to be an allergist. In her second and third years of residency, she began having symptoms that she thought were related to the stress of putting together her fellowship application while working in the hospital.   [3:56] One day, Dr. Huang had a terrible episode of vomiting and she knew she needed to get medical advice rather than trying to treat herself.   [4:17] Dr. Huang learned about EoG for the first time after she was being evaluated for it. During her residency, she had learned about EoE, but not other eosinophilic gastrointestinal disorders (EGIDs). Her allergist brought it up. Dr. Huang did a lot of reading and research after that.   [4:48] Dr. Huang says there were times when she couldn't finish breakfast because of so much nausea and abdominal pain. She started carrying around TumsⓇ, which was something she had never done. Those things made her realize that something was wrong.   [5:11] Dr. Huang was treated by the assistant director of the allergy fellowship program where she is now training. She says he is one of the nicest, smartest people she knows. Dr. Huang had done her internal medicine residency in the same program, so she knew all of the allergists. Dr. Huang had no doubt the doctor would figure out her problem.   [5:49] Dr. Huang remembers the day she had her appointment with him. The intake nurse seemed to recognize Dr. Huang from when she had done rotations in the office, but she couldn't quite place her and didn't ask. [6:19] Dr. Huang describes her difficulties in following the six-food elimination diet that she and her GI doctor decided were the best option for her to manage EoG. Deciding on a treatment plan is a personal decision that should fit the needs of the patient. Dr. Huang decided on the elimination diet with no idea how difficult it would be.   [7:02] Dr. Huang went to the grocery store the same day and was overwhelmed trying to read all the labels. She had never really read nutritional labels before. She stopped going to a lot of restaurants because she had to ask so many questions before ordering.   [7:27] Ryan shares childhood experiences of going from an elemental diet to a strict elimination diet. He relates to Dr Huang's experiences at the grocery store and cooking.   [8:15] When Dr. Huang first began the elimination diet, most of her allowed foods were fruits, vegetables, and meats. She was able to add back most foods within a year but the hardest food for her to avoid in the beginning was soy. Her favorite food is tofu. Soy was the first food she added back and she was so happy when she was okay.   [8:44] When she started reading labels for her elimination diet, Dr. Huang learned that some soy sauce has wheat in it. So, she started buying soy sauce that doesn't have wheat in it.   [8:57] Dr. Huang did the elimination diet as an adult and found it incredibly difficult. She applauds Ryan for doing it as a child. Ryan is grateful to his parents for helping him navigate that along the way.   [9:20] In Dr. Huang's article, she recommended that providers try living on an elimination diet for a week. It's challenging! She has not been able to convince anyone to try it. When she suggests it, the look on their face is telling! It's so hard. If people don't see a reason to do it, it's just not done.   [10:15] An anecdote from Dr. Huang's article was about eating at the American College of Gastroenterology conference. She asked the waiter to help her find something free of milk, wheat, eggs, soy, seafood, and other ingredients she could not have. Ryan felt it was so relatable. Ryan was at a conference this summer where he could not eat.   [11:13] Dr. Huang brings a lot of snacks with her when she travels. She sticks to brands that she knows are safe for her. She searches ahead of time for restaurants with allergen menus. At restaurants, she always shares what foods she is avoiding so they can help her with choices.   [11:42] Mary Jo mentions that the APFED conferences provide appropriate menu choices for people on elimination diets.   [12:17] Dr. Huang's partner is a gastroenterologist specializing in esophageal diseases. He was in general GI fellowship training when Dr. Huang was diagnosed. He has been supportive of what Dr. Huang has been through with the diagnosis. He did the elimination diet with her, helped her cook, and supported her.   [13:27] The elimination diet is the only way Dr. Huang has managed her EoG. She has had repeat endoscopies with biopsies and the diet has been working so far. She's keeping her fingers crossed.   [14:00] When Dr. Huang was first diagnosed, she wasn't sure how bad her disease was or how much worse it would get and it frightened her. Fortunately, her symptoms have been controlled so it hasn't impacted her career that much. But she feels like this diagnosis has given her a calling and a direction for her career.   [14:33] Dr. Huang plans to study EGIDs. She has been doing EGID research studies during her fellowship. She wants to help people with it. She wants people to know that they're not alone and even though we don't have all the answers now, we will one day.   [15:08] Dr. Huang gets excited when she sees that someone is coming in with EoE or EGIDs because she automatically feels a special connection to them. She spends a lot of time counseling on the diagnosis, making sure the treatment plan fits their lifestyle and is something the patient can realistically do.   [15:29] Dr. Huang thinks back to when she would recommend dietary changes without understanding what that meant for the patient. Having gone through it, now she can better counsel patients.    [16:38] Dr. Huang discusses quality of life issues of treatment with her patients. She explains how difficult an elimination diet is. Currently for EoE, the only FDA-approved treatment is dupilumab by injection.    [18:02] Dr. Huang's advice for those with a new diagnosis of EoG is to talk to your doctor and ask a lot of questions. Make follow-up in-person appointments. Make a list of all the questions you have and talk through it with your doctor. If you pursue an elimination diet, get with a dietician to help navigate that. It's confusing in the beginning.   [18:36] Patients, talk to your family and friends. They can help support you at medical appointments and procedures. They can call ahead to restaurants and make sure your dietary restrictions can be met there. They can accommodate your dietary restrictions at home. Don't hide your diagnosis from the people around you. Hiding makes it more difficult.   [19:05] Mary Jo thanks Dr. Jenny Huang for joining them to share her experience and ask for additional thoughts.   [19:18] Dr. Huang wants people with EoG to know that they're not alone. EoG is rare but it's an increasingly recognized and diagnosed disease. It's easy to feel alone when your doctor tells you that you have a rare disease. Someone else out there knows how you feel.   [19:48] Ryan thanks Dr. Huang for sharing all of her experiences today.   [19:51] To connect with others impacted by eosinophilic diseases, join APFED's online community on the Inspire Network at apfed.org/connections.   [20:04] To learn more about eosinophilic gastritis, visit apfed.org/eog. To find a specialist, visit apfed.org/specialists. Ryan recommends reading Dr Huang's article linked below. Ryan and Mary Jo thank Dr. Jenny Huang again for joining them and thank APFED's education partners, linked below, for supporting this episode.   Mentioned in This Episode: “Becoming the Patient” Commentary Published in Gastroenterology Scripps Clinic American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram Real Talk: Eosinophilic Diseases Podcast   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.   Tweetables:   “If you have [eosinophilic] inflammation in the stomach, that is called eosinophilic gastritis or EoG. That can cause symptoms like abdominal pain or nausea.” — Dr. Jenny Huang   “Deciding on a treatment plan is a personal choice and it needs to fit someone's lifestyle and their individual needs. What's right for one person may not be right for someone else.” — Dr. Jenny Huang   “Did you know that soy sauce has wheat in it? I had no idea until I started reading all the labels. So, we started buying soy sauce that doesn't have wheat in it!” — Dr. Jenny Huang   “When I was first diagnosed, I wasn't sure how bad my disease was or how bad it was going to get. I read a lot about the possible outcomes and it really scared me. … I couldn't imagine what it would be like if my symptoms progressed.” — Dr. Jenny Huang   About Dr. Jenny Huang Dr. Jenny Huang is an allergy and immunology fellow at Scripps Clinic. She is passionate about eosinophilic gastrointestinal disorders and has made it her mission to spread awareness about what it is like to live with EGID.  Dr. Jenny Huang “Becoming the Patient,” by Jenny Huang, MD  

Patients have told us they often feel lonely when they or a loved one has been diagnosed with a chronic gastrointestinal condition, such as an eosinophilic disorder like eosinophilic esophagitis (EoE). We invited Mary Jo Strobel, the Executive Director of The American Partnership for Eosinophilic Disorders (Apfed), to help address this major patient and caregiver stressor: “Where can I go for support and resources and connect with others going through similar health journeys?” Mary Jo explains all the resources Apfed has available to patients as well as parents navigating an eosinophilic disorder for their children. Check out the video version of this episode on our YouTube channel, @gastrogirl, for some help navigating Apfed's extensive website and features that you can find at apfed.org. 

In the second episode of the Allergy, Asthma & Immunology Innovations Podcast Series, Dr. G and Kortney dive into the critical topic of controlled and uncontrolled asthma. They shed light on various aspects of asthma, including its types, severity levels, medications, and the importance of asthma action plans. This episode is especially important to our hosts as asthma has personally impacted them. What we cover about controlled asthma: A quick review of asthma Types and severity levels of asthma Asthma can manifest in various forms, including: Allergic asthma (triggered by allergens). Non-allergic asthma (triggered by factors other than allergens). Occupational asthma (caused by workplace exposure). Exercise-induced asthma. Cough-variant asthma (primarily chronic cough). Aspirin-exacerbated respiratory disease (AERD). Late-onset asthma (developing in adulthood). Eosinophilic asthma (inflammation-related). Asthma can be categorized as mild, moderate, or severe based on symptoms and lung function tests. Severity impacts treatment strategies. Medications for asthma management Rescue or emergency medication (for mild asthma). Controller medication (for moderate to severe asthma). Controller medications include inhaled steroids, other medications, and biologics for severe cases. Assessing asthma control Asthma control is evaluated based on the "Rule of 2s". If you have two or more of the following, your asthma may not be controlled; Symptoms more than two days a week. Quick-relief medication usage more than two times a week. Nighttime awakenings due to asthma more than two times a month. Asthma exacerbations require oral steroids twice a year. What is good asthma control, and why is this important The long-term effects of uncontrolled asthma Asthma Peak Week. Creating an asthma action plan Working with healthcare providers and asthma coaches Resources to help you with your asthma control: Asthma Management and Control: https://allergyasthmanetwork.org/what-is-asthma/asthma-management-and-control/  Asthma Action Plan: https://allergyasthmanetwork.org/what-is-asthma/asthma-action-plan/  This page is great because it has multiple types of Asthma Action Plans. Infographic about asthma peak in September: https://allergyasthmanetwork.org/images/Asthma/September_Asthma_Peak_July2023v1.pdf Asthma Coach: www. AsthmaCoach.org and https://allergyasthmanetwork.org/free-asthma-coach-program/. Lifestyle Changes to Manage Asthma: https://allergyasthmanetwork.org/what-is-asthma/lifestyle-changes-to-manage-asthma/ Biologic medications: www.BiologicMeds.org Type 2 Inflammation: eosasthma.org https://allergyasthmanetwork.org/news/when-asthma-more-than-asthma-type-inflammation/

The Hinnenkamps were not planning to start a food business. Then their child was diagnosed with Eosinophilic esophagitis – a serious food allergy. Clo Clo now offers frozen pizza good for all – Vegan, gluten-free, non-gmo and allergy-friendl. More at: https://clocloveganfoods.com/

Eosinophilic esophagitis (EoE) diagnoses are increasing along with the number food allergy cases in general. Amy CaJacob, M.D., and James Callaway, M.D., discuss recent advances in treating this complex, chronic condition. Learn about management strategies including food elimination, topical steroid medications, proton pump inhibitors, and a new monoclonal antibody that can reduce chronic inflammation at the receptor level. The doctors stress the importance of actively managing EoE to avoid persistent dysphagia that requires endoscopic interventions.

Dr. Fred Hsieh discusses eosinophilic-related diseases and their possible causes, such as allergic diseases or parasitic infection. He covers the best way to proceed when your CBC report shows a high eosinophil number and what hypereosinophilia syndrome actually is. Dr. Hsieh reviews the challenge in treating eosinophilic-related diseases with corticosteroids, and new, FDA-approved treatments that use eosinophil-targeting biologics to reduce the eosinophils in the blood.

On this episode Lara and Vyanka talk to Dr Joanne Masterson all about eosinophilic oesophagitis. This is ImmunoTea: Your Immunology Podcast, presented by Dr Lara Dungan and Dr Vyanka Redenbaugh. This is the show where we tell you all about the most exciting research going on in the world of immunology. So grab a cup of tea, sit down and relax and we'll fill you in. Contact us at ImmunoTeaPodcast@gmail.com or @ImmunoTea on twitter. Hosted on Acast. See acast.com/privacy for more information.

A breakdown of what Eosinophilic Granulomatosis with Polyangiitis is and what you need to know as a patient as well as insight from patients on life with EGPA. Here's what you'll find in this episode: What is EGPA? What are the symptoms of EGPA? Complications from EGPA How is EGPA Diagnosed? How is EGPA treated? Side effects from the medications Can EGPA come back? Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! These two things help others find the podcast, find our community, and feel a little less alone in their journey through life with chronic illness! Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email Sources: https://www.mayoclinic.org/diseases-conditions/churg-strauss-syndrome/symptoms-causes/syc-20353760 https://rarediseases.info.nih.gov/diseases/6111/eosinophilic-granulomatosis-with-polyangiitis https://my.clevelandclinic.org/health/diseases/7098--eosinophilic-granulomatosis-with-polyangiitis-egpa-formerly-churg-strauss-syndrome  

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 multi disciplinary 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. 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: a global look at eosinophilic diseases and unmet needs.   [1:28] Holly introduces Dr. Florence Roufosse. Dr. Roufosse is a professor of medicine, an internist, and a clinical immunologist at Erasme Hospital in Brussels and is President of the International Eosinophil Society.   [1:43] In addition to her clinical work, Dr. Roufosse leads translational research projects to improve the understanding and treatment of hypereosinophilic syndromes (HES). She is also involved in international clinical trials evaluating treatment options for patients living with HES and eosinophilic granulomatosis with polyangiitis (EGPA).   [2:18] Dr. Roufosse is an internist working in an academic hospital. An internist is a diagnostician, whom people see if they have many complaints that involve various organs to find a unifying diagnosis for their problems.   [2:47] Dr. Roufosse's interest in eosinophils started when she met Dr. Elie Cogan. He had just published a case report on a patient with hypereosinophilic syndrome who also had T-lymphocytes present. The T-cells were producing growth factors for eosinophils.   [3:21] The hypereosinophilic syndrome in the patient was due to these abnormal T-lymphocytes. The case was in 1996. Dr. Cogan asked Dr. Roufosse if she would agree to do a doctoral fellowship on the topic and try to dive deeper into understanding the disease in this patient.   [3:37] Dr. Roufosse has been working on HES ever since, doing translational research, working with blood samples from patients she sees in the clinic, and studying the cells functionally and on a molecular basis. Dr. Roufosse is foremost a clinician who sees patients in the clinic every day.   [4:00] Dr. Roufosse regularly gets referrals for HES and EGPA. She has a large cohort of patients. Her main job consists of reaching a diagnosis and giving the best treatment to these patients.   [4:44] The main mission of the International Eosinophil Society (IES) is to bring together clinicians, investigators, and researchers interested in eosinophils and eosinophilic disorders. The society held its first meeting in 2001. The pandemic prevented them from celebrating their 20th anniversary in person, but they will meet this summer.   [5:20] IES brings together clinicians who see patients and people who investigate eosinophils in the lab. Close interactions between clinicians and investigators drive the motivation to understand the biology of these disorders, find the therapeutic targets, and work together, combining findings to make progress.   [6:52] There are common unmet needs for eosinophilic diseases and specific unmet needs for individual diseases. Transitioning from pediatric to adult care is an unmet need in eosinophilic esophagitis because the disease begins in childhood. However, eosinophilic syndrome and EGPA occur most commonly in adults.   [7:51] Diagnosis is a bottleneck. When people get the right diagnosis, they are already well on their journey of receiving treatment. Diagnosis combines the need for increased awareness among patients, the public, and physicians. A delayed diagnosis may have consequences for patients, such as a progressive disease that is not controlled.   [8:31] High levels of eosinophils have the potential to damage organs and induce functional damage and functional alterations. They favor fibrosis. The longer eosinophils stay at high levels, the more harm can occur, so there is a consequence in delayed diagnosis.   [8:55] Patients with high eosinophils in blood and tissues will often receive corticosteroid therapy. This is good for a few days but there are numerous side effects to corticosteroid therapy in the short-, middle-, and long-term. Also, the longer the journey is to diagnosis, the more people get discouraged and depressed.   [10:02] Part of the unmet need in diagnosis is awareness. There's a saying, “What you don't know, you can't diagnose.” Many physicians don't know about these eosinophilic conditions.   [12:13] APFED and Dr. Roufosse worked together to author “Improving Care in Eosinophil Associated Diseases: A Charter.” The charter outlines the needs and the rights of patients with eosinophil-associated diseases.   [13:03] The rights of patients include the right to a timely diagnosis, which implies awareness about the diseases among the public, healthcare providers, and policy makers. Patients also have the right to access multi disciplinary care teams, as the disease may affect different tissues and organs. A patient may even have several disorders at once.   [14:06] It's important that if treatment options are available; patients need to have access to them. This is not the case in all countries. Patients need rapid access to the therapies once an indication has been decided by a specialist.   [14:53] Quick diagnosis will decrease the accrual of damage due to the disease, inadequate treatment, and overexposure to corticosteroid treatment. From a psychological point of view, it's very reassuring to rapidly feel that a label has been given to the disease and that there's a plan. When there's no label, there's no plan.   [15:47] The key to shortening the diagnostic timeline is awareness at all levels of healthcare education and specialization. General practitioners need to be educated on what it means and what to do when they see a high eosinophil count in blood or tissue. There needs to be access to the tools to diagnose the associated disorders.   [17:00] Patients need easier access to referral centers where they see the experts and access the tools for diagnosis. Multidisciplinary team care is needed when diseases hit different organs.   [17:44] When EGPA is controlled with immunosuppressive therapy, often asthma remains a serious problem and very difficult to manage. You need a pulmonologist to take care of that aspect. You need an ear, nose, and throat doctor for complications in those areas. Cardiovascular complications need a cardiologist.   [19:21] Dr. Roufosse says it is still challenging for patients to access a multidisciplinary care team. Creating a multidisciplinary care team requires resources. It has to be supported by a hospital. The institution needs to be an academic institution with funding, as doctors meeting to discuss a difficult case does not generate income for the institution.   [20:39] Ryan worked with a multi disciplinary care team as a young EoE patient. He traveled every year from his home in Georgia to the multi-disciplinary care team in Denver, Colorado. The fact that his family was able to travel out of state was wonderful. The team was effective and he misses it. Now he has separate appointments for each type of doctor.   [22:32] New therapies, for those who have had access to them through clinical trials, are decreasing the need for corticosteroid therapy in many patients. Practically half of the patients with hypereosinophilic syndrome can be tapered off corticosteroids. Dr. Roufosse tells of one of her first patients, whose life was changed by these therapies.   [24:04] Not every aspect of disease responds as well to these new therapies, revealing new unmet needs that are being tested with additional new therapies. Dr. Roufosse's first patient has been helped greatly with biologics for almost 20 years now.   [24:55] Dr. Roufosse speaks of more unmet treatment needs. Eosinophils are only a part of the picture. EoE is a complex disease about more than eosinophils. We need more understanding of what the key pathogenic events are across the range of eosinophil-related disorders to be able to identify new therapeutic targets.   [26:00] With clinical trials, it can be difficult to find suitable endpoints for the trial and define the efficacy of a new treatment. When is the disease still active with treatment? When can we start decreasing the intensity of treatment? How long do we have to treat with these drugs? Many of these questions are still completely unanswered.   [26:53] Over the past 25 years, the time to diagnosis has decreased. Dr. Roufosse rarely now has a patient referred to her that already has severe, irreversible damage.   [27:21] How to score disease activity is an area where we still have a lot of work to do.   [27:37] Medical codes are used to classify and group diseases for reporting statistical information. In the U.S., they are important for diagnostics and what treatments you get access to. In 2020, new codes (ICD-10) were approved for various subsets of eosinophilic diseases.   [28:09] ICD-10 codes are used less in Belgium than in the U.S. but a disease does not “exist” if it doesn't have a code. Without a code, there is no access to diagnostic tools or reimbursement for therapy for the disease. You need codes to justify hospitalization. C codes also allow Holly's patients to receive feeding therapy.   [30:43] To help patients and caregivers identify medical professionals offering care for eosinophil-associated diseases, APFED hosts a Specialist Finder on its website. It largely has clinicians in the U.S. You can access it at apfed.org/specialists. There is also a badge for specialists who are members of the International Eosinophil Society.   [31:10] Dr. Roufosse suggests having handouts for patients listing patient associations and places to find information on their disease. Some people are more comfortable with something tangible and physical. Not everyone uses Google! Doctors need to use different means to share information on how to access specialists.   [32:11] Policymakers are important in bringing together information to give access to proper care for these disorders.   [33:56] Dr. Roufosse discusses unmet needs in research. We understand so little about these diseases, although great progress has been made in understanding that the eosinophil is a toxic cell that can cause damage and if you target those eosinophils, you are going to prevent some of that damage. We don't yet have the full picture.   [34:32] Some unmet needs are understanding what part of each of these disorders is influenced genetically or combines genetics with environmental triggers. What cells initiate the inflammatory process? What cells and mediators maintain the process? Which mediators should we target? How do we do it without compromising immunity?   [35:12] It appears that targeting eosinophils in humans is innocuous, but what are they for? We are learning about what eosinophils are for in mice, but very little about what they're for in humans. Are normal eosinophils irreplaceable or are there redundant functions with other cells? Some patients have high eosinophils without any illness.   [35:46] Some patients have lower eosinophil counts than others and they have rapidly progressive cardiac damage. What characterizes a bad eosinophil? We don't have the tools to recognize that, yet. We can't predict which patients are going to require more aggressive therapy earlier in their disease course. That's very important to research.   [36:39] Dr. Roufosse recommends using the apfed.org website with its Specialist Finder and relevant patient resources. Awareness is the key to faster diagnosis, accessing treatment, and avoiding harmful treatment.   [37:35] Ryan and Holly thank Dr. Roufosse for being on the podcast. Ryan shares the links including apfed.org, apfed.org/specialists, and apfed.org/eos-connections links. Holly and Ryan thank APFED's education partners, linked below.   Publications discussed: Patient charter: Apfed.org/advocacy/ead-patient-charter/  Link.springer.com/article/10.1007/s12325-022-02110-8 Pubmed.ncbi.nlm.nih.gov/29672914/   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram 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 Real Talk: Eosinophilic Diseases Podcast   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.   Tweetables:   “The International Eosinophil Society is a dynamic ... society whose main mission is to bring together clinicians, investigators, and researchers ... interested in eosinophils and eosinophilic disorders. ” — Florence Roufosse, MD, PhD   “Transitioning from pediatric to adult care is typically an unmet need in eosinophilic esophagitis, which very commonly begins in childhood.” — Florence Roufosse, MD, PhD    “The unmet need, in … diagnosis, is awareness. … There's a saying that what you don't know, you can't diagnose. … Many physicians don't know about these eosinophilic conditions. … Turn toward someone … who is more likely than you to know.” — Florence Roufosse, MD, PhD     Featured speaker: Florence Roufosse, MD, PhD Professor of Medicine, Internist, and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, President, International Eosinophil Society   Dr. Florence Roufosse is a Professor of Medicine, Internist, and Clinical Immunologist at CUB-Hôpital Erasme, Brussels, and is President of the International Eosinophil Society. She is in charge of a specialized consultation dedicated to diagnosing and treating eosinophil-related conditions, that is integrated in the European Reference Network: EuroBloodNet. She also manages patients with systemic auto-immune and auto-inflammatory conditions.   Besides these clinical activities, Dr. Roufosse leads translational research projects to improve the understanding and treatment of lymphocytic variant hypereosinophilic syndrome (HES) and participates in international research efforts to better delineate disease course and treatment responses of HES. She is involved in the design and conduct of international clinical trials evaluating the efficacy of novel treatment options in patients with HES and eosinophilic granulomatosis with polyangiitis (EGPA), as well as sub-studies that aim to identify biomarkers and/or disease variants predicting treatment responses.

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.   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 duodenitis, or EoD (formerly referred to as eosinophilic gastroenteritis or EGE), and National Eosinophil Awareness Week.   [1:27] Holly introduces Jess Seidel, a patient advocate impacted by EoD.   [1:41] EoD is a condition that affects the digestive tract, caused by an increase of a type of white blood cell called eosinophils that causes inflammation. Jess was diagnosed with EoD when she was two years old.   [2:30] Jess also had eosinophilic esophagitis and issues in the stomach, as well as the intestines. Her primary treatment was stopping food by mouth and using a feeding tube when she was seven years old.   [3:11] Jess has early memories of hospital stays and doctor visits. An early memory that sticks out is trying to drink formula for lunch at school before getting a feeding tube. She notes that everyone was nice to her and curious about her drink. They asked her questions.   [4:39] Jess's younger brother was diagnosed with EoD when he was about seven years old.   [4:48] Ryan's older sister does not have an eosinophilic disorder. He speaks of how supportive she has always been of him and his needs.   [5:28] Fortunately, Jess's brother did not have the same intensity of issues as Jess. He didn't need a feeding tube and his disease is under control at the moment. But there is something to be said for having somebody who just “gets it.” You don't have to explain to them where you're coming from. They just understand what you're going through.   [6:08] Ryan appreciates the annual APFED conference and hanging around people his age who have had similar experiences.   [6:27] Holly is kind of jealous as she had an older brother who didn't get it at all. He's trying hard but he still struggles with it. He's reading articles and learning more about why they have to pick certain restaurants. Holly enjoys working with people who have eosinophilic diseases. It's therapeutic for her.   [7:05] Jess is studying film and video production in college. Media has always been an escape for her. It allowed her to experience something different from what was going on in her life. But she always felt underrepresented in the media she consumed. She never saw well-rounded characters experiencing anything that she had.   [8:14] When she got back into college and screenwriting and directing, she saw an opportunity not only to create more opportunities for escapism but also to champion more disability and chronic illness representation, both on the screen and behind the camera.   [8:52] Holly and Ryan love that Jess is working advocacy into her studies and career path. Holly recently saw a medical drama that had a patient with a food impaction and she felt very seen. Patient advocacy is a huge part of APFED.   [9:22] Ryan and Jess met at APFED conferences when Ryan was four or five but Ryan's first memory of Jess was in 2007 in Washington, D.C. They had G-tubes and backpacks with pumps. They talked to legislators asking for help with formula coverage and the establishment of National Eosinophil Awareness Week.   [10:43] Jess remembers the feeling of being in Washington, D.C. At age 11, she felt the gravity of the situation: how important it was that these legislators were listening and how important it was to get them to understand and pass medical formula coverage legislation so people could get the help they needed. It meant a lot to Jess.   [11:40] Ryan was seven at the time. He was impressed by Jess as an older patient who clearly understood what they were doing in Washington, D.C. It was an inspiration to him, seeing someone who had these shared experiences with him, going out of the way to make sure more people could understand what patients are going through.   [12:25] Jess points out that it's such a rare disorder and at the time almost nobody knew anything about it. National Eosinophil Awareness Week allows us to put it in the forefront for a week and help amplify the voices of everybody that's affected by it, from the patients to the families to the doctors working hard to try to treat it.   [13:06] Jess has seen a huge uptick in awareness about eosinophilic disorders. When Jess got diagnosed at two, nobody knew what it was. She had to go to a specialist at a children's hospital an hour from home to get the diagnosis. They went through doctors who told her parents they were overreacting or not being good parents by not making her eat.   [13:39] The doctors didn't know about eosinophilic disorders. There are more resources available now and it's easier for people to access them. Jess started working with APFED at the beginning of its existence. Now, with a diagnosis, you can go to the internet and find great resources.   [14:29] Ryan was diagnosed with EoE in 2002 when he was two. At first, the doctors said he was throwing up for attention. Today, the awareness of eosinophilic disorders like EoE has spread so much. We're in a better place these days.   [15:07] Holly's journey was different, being diagnosed when older. Growing up, she and her mom were told they were crazy, or she was bulimic. Holly loves that there is now a dedicated week for eosinophil awareness. Patients can feel they have a community and be supported.   [15:41] Jess's condition varies from day to day or even hour to hour, affecting how she might be feeling. She can have great days and then days when she cannot function. She doesn't know what kind of day she's going to have until she wakes. On a bad day, she'll do what she needs to do to take care of herself and be kind to herself.   [15:56] Since 2007, APFED has celebrated National Eosinophil Awareness Week during the third week of May. Resources for 2023 National Eosinophil Awareness Week, May 14th‒20th, may be found at apfed.org/NEAW. APFED currently has an awareness campaign running in New York, in Times Square, with a billboard raising awareness for eosinophilic esophagitis.   [19:10] Jess thanks Ryan and Holly for having her on the Real Talk — Eosinophilic Diseases podcast. Jess says, if you're dealing with an eosinophilic disorder, find a community to have people in your life who understand and support you. It is absolutely invaluable to have a support system and to know that you are not alone. Reach out.   [20:02] Ryan and Holly thank Jess for taking the time to be on the podcast. Ryan shares resources including apfed.org, apfed.org/connections, and apfed.org/NEAW. It's all about raising awareness and finding a community of support. Holly thanks the education partners linked below.   Mentioned in This Episode: American Partnership for Eosinophilic Disorders (APFED) APFED on YouTube, Twitter, Facebook, Pinterest, Instagram National Eosinophil Awareness Week 2023 apfed.org/connections Real Talk: Eosinophilic Diseases Podcast   Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, Sanofi, and Regeneron.  

4.01 Small Vessel Vasculitis Rheumatology review for the USMLE Step 1 exam Vasculitis is inflammation of blood vessels and is classified into three categories based on vessel size: large, medium, and small vessel vasculitis. Small vessel vasculitis affects arterioles, capillaries, and venules, leading to symptoms associated with damage to these vessels, such as palpable purpura. Five types of small vessel vasculitis include IgA vasculitis (Henoch-Schonlein Purpura), Granulomatosis with polyangiitis (Wegener Granulomatosis), Eosinophilic granulomatosis with polyangiitis (Churg-Strauss syndrome), Microscopic polyangiitis, and Behçet syndrome. IgA vasculitis is the most common in children, and anti-neutrophil cytoplasmic antibody + vasculitis are the most common in adults. IgA vasculitis is caused by the deposition of IgA immune complexes after an upper respiratory or GI tract infection, leading to palpable purpura, renal, GI, and joint involvement. It resolves on its own in a few weeks, and steroids and NSAIDs are used to reduce severity of symptoms.

Go online to PeerView.com/TGA860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is a chronic allergic type 2 inflammatory disease characterized by a clinical and pathologic phenotype of progressive esophageal dysfunction due to tissue inflammation and fibrosis. Diagnosis of EoE is frequently missed or delayed, which can lead to such complications as esophageal stricture and reduced patient quality of life. Fortunately, targeted biologic therapies already approved for other type 2 inflammatory disorders are approved, or are in development, for the treatment of EoE and appear promising. This case-based activity will offer expert insights for recognizing and diagnosing EoE, monitoring and managing EoE, and integrating targeted therapies into practice. Upon completion of this activity, participants should be better able to: Diagnose eosinophilic esophagitis (EoE) promptly according to the latest guidelines and criteria to decrease the risk of complications precipitated by uncontrolled disease; Apply the latest clinical research developments and updates in treatment guidelines to the management of EoE in collaboration with the healthcare team; and Select treatment, including novel targeted biologic therapies, for patients with EoE based on the latest clinical evidence

Go online to PeerView.com/TGA860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is a chronic allergic type 2 inflammatory disease characterized by a clinical and pathologic phenotype of progressive esophageal dysfunction due to tissue inflammation and fibrosis. Diagnosis of EoE is frequently missed or delayed, which can lead to such complications as esophageal stricture and reduced patient quality of life. Fortunately, targeted biologic therapies already approved for other type 2 inflammatory disorders are approved, or are in development, for the treatment of EoE and appear promising. This case-based activity will offer expert insights for recognizing and diagnosing EoE, monitoring and managing EoE, and integrating targeted therapies into practice. Upon completion of this activity, participants should be better able to: Diagnose eosinophilic esophagitis (EoE) promptly according to the latest guidelines and criteria to decrease the risk of complications precipitated by uncontrolled disease; Apply the latest clinical research developments and updates in treatment guidelines to the management of EoE in collaboration with the healthcare team; and Select treatment, including novel targeted biologic therapies, for patients with EoE based on the latest clinical evidence

Go online to PeerView.com/TGA860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is a chronic allergic type 2 inflammatory disease characterized by a clinical and pathologic phenotype of progressive esophageal dysfunction due to tissue inflammation and fibrosis. Diagnosis of EoE is frequently missed or delayed, which can lead to such complications as esophageal stricture and reduced patient quality of life. Fortunately, targeted biologic therapies already approved for other type 2 inflammatory disorders are approved, or are in development, for the treatment of EoE and appear promising. This case-based activity will offer expert insights for recognizing and diagnosing EoE, monitoring and managing EoE, and integrating targeted therapies into practice. Upon completion of this activity, participants should be better able to: Diagnose eosinophilic esophagitis (EoE) promptly according to the latest guidelines and criteria to decrease the risk of complications precipitated by uncontrolled disease; Apply the latest clinical research developments and updates in treatment guidelines to the management of EoE in collaboration with the healthcare team; and Select treatment, including novel targeted biologic therapies, for patients with EoE based on the latest clinical evidence

Go online to PeerView.com/TGA860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is a chronic allergic type 2 inflammatory disease characterized by a clinical and pathologic phenotype of progressive esophageal dysfunction due to tissue inflammation and fibrosis. Diagnosis of EoE is frequently missed or delayed, which can lead to such complications as esophageal stricture and reduced patient quality of life. Fortunately, targeted biologic therapies already approved for other type 2 inflammatory disorders are approved, or are in development, for the treatment of EoE and appear promising. This case-based activity will offer expert insights for recognizing and diagnosing EoE, monitoring and managing EoE, and integrating targeted therapies into practice. Upon completion of this activity, participants should be better able to: Diagnose eosinophilic esophagitis (EoE) promptly according to the latest guidelines and criteria to decrease the risk of complications precipitated by uncontrolled disease; Apply the latest clinical research developments and updates in treatment guidelines to the management of EoE in collaboration with the healthcare team; and Select treatment, including novel targeted biologic therapies, for patients with EoE based on the latest clinical evidence

Join Yvonne Brandenburg, RVT, VTS SAIM and Jordan Porter RVT, VTS SAIM as we talk about: Well we start out discussing spring time and groundhogs, welcome to that education! Eosinophilic Bronchopneumopathy is an inflammatory process that can cause respiratory changes within a pet, often appearing like a mass.   Resources We Mentioned in the Show  Allergic Pneumonitis in Dogs and Cats  Caroline C. Tonozzi , DVM, DACVECC, Mission Veterinary Partners Medically Reviewed Feb 2022 | Modified Oct 2022 https://www.merckvetmanual.com/veterinary/respiratory-system/respiratory-diseases-of-small-animals/allergic-pneumonitis-in-dogs-and-cats Eosinophilic Bronchopneumopathy in Dogs C. ClercxWorld Small Animal Veterinary Association Congress Proceedings, 2017. https://www.vin.com/apputil/content/defaultadv1.aspx?id=8506308&pid=20539& Successful Management of Eosinophilic Bronchopneumopathy in a Dog Received: September 15, 2021; Revised: October 19, 2021; Accepted: October 19, 2021https://www.e-jvc.org/journal/view.html?doi=10.17555/jvc.2021.38.6.269       Thanks so much for tuning in. Join us again next week for another episode!  Want to earn some RACE approved CE credits for listening to the podcast? You can earn between 0.5-1.0  hour of RACE approved CE credit for each podcast episode you listen to.    Join the Internal Medicine For Vet Techs Membership to earn and keep track of your continuing education hours as you get your learn on!   Join now! http://internalmedicineforvettechsmembership.com/   Get Access to the Membership Site for your RACE approved CE certificates Sign up at https://internalmedicineforvettechsmembership.com  Get Access to the Technician Treasure Trove  Sign up at https://imfpp.org/treasuretrove    Thanks for listening!  – Yvonne and Jordan 

About 50% of infants younger than 3 months spit up at least once a day, but what if it's a chronic problem for yours? Or maybe you have a toddler or big kid who has trouble swallowing and seems miserable at mealtimes—it could be acid reflux. The good news is that there are plenty of natural remedies for acid reflux in babies and big kids. In this episode, I sat down with Dr. Sheila Kilbane, a board-certified pediatrician, who is also trained in integrative medicine, and the best-selling author of Healthy Kids, Happy Moms: 7 Steps To Prevent and Health Common Childhood Illnesses. Dr. Kilbane shares everything you need to know about acid reflux, the 11 foods that cause 90% of the issues, and which foods to focus on. She also lets us in on other natural remedies for acid reflux, including the best supplements she uses with her patients and when the right time is to start using them. Welcome 2:19 Let's talk about your story! 7:19 What is the definition of acid reflux and what causes it? 9:54 Can toddlers have acid reflux as well and what are the causes? 12:53 If acid reflux is untreated, can it lead to other problems? 13:46 Will a conventional pediatrician take a different approach than an integrative pediatrician? 15:30 Are antacids effective and are there drawbacks to using them? 18:42 What happens if you stop antacids abruptly? 21:57 What are natural remedies for acid reflux? 24:51 Should kids avoid foods like gluten and dairy? 26:16 What are the best foods to focus on for acid reflux? 33:22 Do you recommend probiotics and prebiotics? 34:42 Do kids have to follow the protocol forever? LINKS MENTIONED IN THE SHOW Dr. Kilbane mentions Eosinophilic esophagitis. Dr. Kilbane talks about her line of supplements including BiAloe and Plantadophilus. Learn more about Dr. Kilbane on her website and register for her course. Purchase Dr. Kilbane's book, Healthy Kids, Happy Moms: 7 Steps To Prevent and Health Common Childhood Illnesses. Follow Dr. Kilbane on Instagram and Facebook. FROM OUR PARTNERS Kids Cook Real Food eCourse The Kids Cook Real Food eCourse, created by a mom of 4 and a former elementary school teacher, is designed to build connection, confidence, and creativity in the kitchen. The course includes 30 basic cooking skills, 45 videos including several bonuses, printable supply and grocery shopping lists, and kid-friendly recipes. The course is designed for all kids ages 2 to teen and has three different skill levels. More than 18,000 families have taken the course and The Wall Street Journal named it the #1 cooking class for kids. Sign up now for the Kids Cook Real Food ecourse and get a free lesson for being a “Food Issues” listener. Thrive Market Thrive Market is an online membership-based market that has the highest quality, organic, non-GMO, healthy, and sustainable products. From groceries, clean beauty, safe supplements, and non-toxic home products to ethical meat, sustainable seafood, clean wine, and more, Thrive Market is where members save an average of $32 on every order! Through Thrive Gives, every paid membership sponsors a free one for a low-income family. Join Thrive Market today and get 25% off your first order and a free gift. 

Go online to PeerView.com/MKN860 to view the activity, download slides and practice aids, and complete the post-test to earn credit. Eosinophilic esophagitis (EoE) is an increasingly prevalent, chronic, T2 inflammatory disease triggered by food and/or environmental allergens. Due to underlying tissue inflammation, patients suffer diminished quality of life due to symptoms such as weight loss, difficulty swallowing, and heartburn. Patients can experience these symptoms for a long time before receiving a proper diagnosis. Once diagnosed, treatment options have historically been limited. Fortunately, therapies that treat other type 2 disorders are in development or are approved to treat EoE. At a recent live event, experts used patient cases to discuss the diagnosis, underlying causes, and the newest treatments for EoE, including biologic therapies. Watch this on-demand version now! Upon completion of this activity, participants should be better able to: Distinguish signs and symptoms of eosinophilic esophagitis (EoE) among children and adults to enable an earlier diagnosis and minimize complications due to uncontrolled disease; Recognize underlying mechanisms of EoE, including the role of key cytokines such as interleukins -4, -13, and -5 as drivers of type 2 inflammation and how this relates to emerging treatment; and Apply the latest expert recommendations and clinical evidence to the treatment of patients with EoE, particularly as novel and emerging agents become available.

Dr. Martin answers questions sent in by our listeners. Some of today's topics include: Keeping herpes dormant Thyroid Balance Formula Baker's cyst behind knee Limits on eating liver Fosamax for osteoporosis Eosinophilic esophagitis Oil of oregano Causes of polyps Barometric pressure changes Prolapse bladder  

Like, rate, and leave a review on Apple Podcasts or a rating on Spotify! Follow @theunfitpod on Instagram, Twitter and TikTok. This week's guest is Phil Hates Gluten! (03:35) Phil is a content creator who pokes fun at the gluten free lifestyle on TikTok, where he's built an audience of over 121K gluten-hating friends. It all started a few years ago when he was diagnosed with Eosinophilic Esophagitis (EOE) and was told by doctors to go gluten free–without much guidance on how to do so. (He's also dairy free, but ‘Phil Hates Gluten' just rolls off the tongue way more). We're talking about what it was like to receive a diagnosis that would completely change the way he ate (05:07), sharing his story with the world, gluten free beers (27:17) and more! Follow @PhilHatesGluten on TikTok or Instagram for his sarcasm and GF/DF food recommendations. For merch, check out philhatesgluten.com.Phil's fave GF beers:HolidailyGlutenbergGround Breaker BrewingGhostfish

On this episode of Food Allergy Talk, I welcome Ryan Piansky, a college student living with EoE as well as a patient advocate and community member with the American Partnership for Eosinophilic Disorders also known as APFED.Ryan was just two years old when he was diagnosed with EoE, and has had to deal with the symptoms and food triggers all his life. He has a number of allergens from EoE as well as some other anaphylactic allergies as well. Today we will chat with Ryan about his journey living a life with EoE and food allergies, how he got involved with APFED, what is APFED, what is EoE?Ryan Piansky is a 22 year old college student living with Eosinophilic Esophagitis and Eosinophilic Asthma. He has been involved with the American Partnership of Eosinophilic Disorders for over 10 years as a community member and patient advocate. He's passionate about sharing his own experiences with a chronic condition to help APFED in aiding others with their journeys with eosinophilic disorders. The American Partnership for Eosinophilic Disorders (APFED) is a 501c3 nonprofit organization founded in December 2001 by a group of mothers of young children living with eosinophil-associated diseases. We are a patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders.The APFED Mission Statement:To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.Links:Follow APFED on Instagram and Twitter @APFEDorgWebsite : apfed.orgPodcast : apfed.org/podcast or search for Real Talk: Eosinophilic Diseases, wherever you get your podcastsOnline Community: apfed.org/connectionsListen online anytime: https://foodallergypi.com/the-food-allergy-talk-podcast/ or on any podcast player.

In this episode, we review the high-yield topic of Eosinophilic Granulomatosis with Polyangiitis (Churg- Strauss Syndrome) from the Rheumatology section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets

Join Yvonne Brandenburg, RVT, VTS SAIM and Jordan Porter RVT, LVT, VTS SAIM as we talk about: FelineEosinophilic Granuloma Complex or FEGC for short. This can affect the skin or the oral cavity, so lets take a dive into this immune issue.    Question of the Week Have you seen FEGC recently and how did treatment go?  Leave a comment at https://imfpp.org/episode127  Resources We Mentioned in the Show  Cornell: Feline Eosinophilic Granuloma Complex: https://www.vet.cornell.edu/departments-centers-and-institutes/cornell-feline-health-center/health-information/feline-health-topics/eosinophilic-granuloma-complex iCatCare: Eosinphilic Granuloma Complex: https://icatcare.org/advice/eosinophilic-granuloma-complex/ Merck Veterinary Manual: Eosinophilic Granuloma Complex in Cats: https://www.merckvetmanual.com/cat-owners/skin-disorders-of-cats/eosinophilic-granuloma-complex-in-cats VIN:  https://veterinarypartner.vin.com/default.aspx?pid=19239&id=4951528 Merrill, L. (Ed.). (2012). Small Animal Internal Medicine for Veterinary Technicians and Nurses. Ames, Iowa: John Wiley & Sons.   Thanks so much for tuning in. Join us again next week for another episode!  Want to earn some RACE approved CE credits for listening to the podcast? You can earn between 0.5-1.0  hour of RACE approved CE credit for each podcast episode you listen to.    Join the Internal Medicine For Vet Techs Membership to earn and keep track of your continuing education hours as you get your learn on!   Join now! http://internalmedicineforvettechsmembership.com/   Get Access to the Membership Site for your RACE approved CE certificates Sign up at https://internalmedicineforvettechsmembership.com  Get Access to the Technician Treasure Trove  Sign up at https://imfpp.org/treasuretrove    Thanks for listening!  – Yvonne and Jordan