Living with a chronic condition can be challenging, especially when it often goes undiagnosed. Eosinophilic esophagitis (EoE) is one such condition, affecting numerous people who might not even be aware of it. To help bridge this knowledge gap, we’ve partnered with global advocacy groups in the EoE community to create a comprehensive guide aimed at identifying and understanding EoE.
Our aim is to facilitate meaningful conversations between patients and healthcare providers, ensuring timely and accurate access to treatment for better outcomes.
If you suspect you might have EoE, we encourage you to download this guide and speak to a healthcare provider about symptoms you are experiencing. We also encourage people in our community to share this material and help spread awareness of EoE.
Wildfires bring unique challenges for people with asthma, including eosinophilic asthma, as smoke and poor air quality can worsen symptoms and trigger asthma attacks. Below are resources that may help those affected navigate these difficulties. While not comprehensive, we hope this list provides useful guidance.
General Resources
AirNow Air Quality Index (AQI). AirNow is a partnership of the U.S. Environmental Protection Agency, National Oceanic and Atmospheric Administration (NOAA), National Park Service, NASA, Centers for Disease Control, and tribal, state, and local air quality agencies.
APFED Partners with Viewpoint with Dennis Quaid to Spotlight Eosinophilic Esophagitis (EoE) in Nationwide TV Segment
Atlanta, GA – January 7, 2025 – The American Partnership for Eosinophilic Disorders (APFED) is thrilled to announce its collaboration with Viewpoint with Dennis Quaid, a trusted platform for thought-provoking discussions and educational content. Together, APFED and Viewpoint will bring national attention to eosinophilic esophagitis (EoE), a chronic immune condition affecting the esophagus.
This full segment explores EoE, shedding light on the experiences of those living with this complex condition. Through this initiative, APFED aims to raise awareness, encourage viewers to recognize symptoms in themselves or loved ones, and inspire meaningful conversations with healthcare providers.
APFED is dedicated to improving the lives of individuals affected by eosinophil-associated diseases through education, advocacy, support, and research. The segment underscores the importance of a collaborative, informed community in driving innovation and improving outcomes for patients.
The national airing of clips from the documentary begin January 8, 2025, on Fox Business Network during primetime (estimated airtime 6:30pmET, but could vary by an hour). Additional broadcasts will follow on major networks, including CNN, MSNBC, CNBC, Discovery Life, Family Channel, and CNN Headline News, with availability throughout the year.
“We are excited to collaborate with Viewpoint with Dennis Quaid to bring EoE into focus,” said APFED Executive Director Mary Jo Strobel. “This partnership represents an incredible opportunity to educate the public, support the EoE community, and advocate for early diagnosis and effective care.”
Funding for this campaign was made available thanks to a grant from Sanofi and Regeneron. For more information about APFED and its mission, visit www.apfed.org.
About APFED
The American Partnership for Eosinophilic Disorders (APFED) is a nonprofit organization that supports families affected by eosinophil-associated diseases. APFED works to educate, advocate, and fund innovative research to improve the lives of those with these chronic conditions.
Eosinophilic esophagitis (EoE) is a chronic condition that affects the esophagus, the tube that carries food from the mouth to the stomach. It is characterized by inflammation caused by an excess of eosinophils, a type of white blood cell. This inflammation can lead to symptoms like difficulty swallowing, food getting stuck in the throat, and chest pain.
EoE is becoming more recognized as a significant cause of swallowing problems in both children and adults. The inflammation caused by EoE can narrow the esophagus and make eating uncomfortable.
For some, managing EoE may require a team approach involving various healthcare professionals, including gastroenterologists, allergists, and other specialists, such as dietitians and speech-language pathologists (SLPs). SLPs help patients manage the practical challenges of eating and swallowing.
Holly Knotowicz, M.S., CCC-SLP is a certified speech language pathologist who specializes in feeding assessment and therapy. Holly herself has EoE and as a co-host of APFED’s podcast, she candidly shares her personal experiences with the condition. Here, she answers a few questions about how SLPs can help those who have EoE:
Q: How might one know if an SLP would benefit them or their child?
A: If you or your child are having any issues surrounding eating (eating preferred foods, learning about new foods, expanding variety of intake), swallowing (discomfort when swallowing, foods becoming stuck) and taking pills, an SLP will be able to assist and support you.
An SLP can help you understand which compensatory strategies can make swallowing more comfortable. This can be anywhere from learning how to modify your favorite food so you can enjoy it again to swallowing medications. For children specifically, they can help them learn about new foods, or different variations of their preferred foods in a new form (especially for children on elimination diets, chicken tenders to GF/DF chicken tenders, allergen safe bread, etc).
Q: What kinds of exercises or techniques do you use to help people with EoE who have trouble swallowing? Do these methods change depending on how old the person is?
A: For anyone with EoE, there are several compensatory strategies that can be very helpful to make eating and swallowing more comfortable. They are generally the same strategies for all ages. Below are some examples of things you can start doing on your own.
Utilize dips/sauces to help lubricate your esophagus when swallowing
Incorporate taking sips of a drink after every few bites ( otherwise known as a liquid wash) to help clear esophageal residue and helps foods go down easier
Taking smaller bites and encouraging thorough chewing
Cook foods in wet/moist preparation (crock pot, instant pot, soups/stews) versus grilling.
Q: How do you work with patients and other healthcare professionals to create eating plans or strategies that fit with managing EoE?
A: Ensuring everyone understands the diagnosis and how it affects the individual is the first step. I also participate in healthcare team discussions or school meetings to foster a better understanding of the diagnosis and to develop strategies to effectively implement a feeding and eating plan.
Feeding and eating plans often include:
Tube feeding schedules for children requiring enteral feedings.
High-calorie supplement goals, such as supervised consumption during school hours or in designated areas.
Volume goals, with prompts to encourage meal completion.
Mealtime and presentation adjustments, recognizing that children with EoE may need extra time to eat.
Compensatory strategies tailored to individual needs.
These plans may require the development of a 504 plan to accommodate eating at school.
I also collaborate with other professionals involved in the patient’s care, such as occupational therapists, dietitians, allergists, gastroenterologists, endocrinologists, LCSWs, and psychologists to ensure their goals are appropriate for EoE and support the patient’s quality of life.
Q: What long-term strategies do you use to help patients with EoE cope with their swallowing difficulties over time?
A: Some longtime strategies that can be really helpful include ensuring you find a drink that helps you clear the food in your mouth and esophagus. Some patients report that carbonated water helps move food more easily than regular water. They also report that sugary drinks tend to make the foods stick more.
We help change perspectives on how food is prepared and eaten to make it easier to swallow. For example, if a person typically avoids dry or crumbly foods but really wants to eat them, they may be able to make modifications and add dips or sauces to help make swallowing those foods more comfortable.
Oftentimes pairing foods that tend to stick with a carrier food such as something crunchy like chips and crackers, or dips/sauces, can help create more salvia in your mouth and make it easier to chew and swallow. This is especially helpful for children and adults who have strong sensory preferences and dislike moist/wet foods on their own learn to like these textures when paired with a carrier food.
To learn more tips and strategies from Holly, check out this webinar she presented to share how to increase volume and variety during mealtimes:
The American College of Gastroenterology (ACG) hosted its Annual Scientific Meeting & Postgraduate Course in Philadelphia, Oct. 25-30, 2024. ACG is a recognized leader in educating GI professionals and the general public about digestive disorders.
During the conference, attendees had the opportunity to participate in a number of sessions to further their understanding of eosinophilic GI disease, including clinical presentation, evaluation, and treatment of eosinophilic gastrointestinal disorders based on current evidence.
Attendees visited the APFED booth in the exhibit hall to pick up educational materials to share with their patients and to learn about professional resources, and to chat with us about the needs of patients.
Other meeting highlights are as follows:
A session on esophageal disorders was hosted and included EoE and updates from the ACG Guidelines which are expected be published in early 2025. See this interview with Dr. Evan Dellon posted to the Gastroenterology Learning Network who summarizes the guidelines.
Sanofi and Regeneron (makers of Dupixent® (dupilumab), a biologic approved in the U.S. to treat EoE) sponsored a number of special learning opportunities that spotlighted EoE, including two Product Theaters and a Satellite Symposium. Product theaters discussed how and why EoE management strategies should evolve as our understanding of disease pathogenesis grows. The other showcased how inhibiting two key cytokines can impact disease and the efficacy and safety of a treatment option. The Satellite Symposium equipped clinicians with the knowledge and skills necessary to optimize diagnosis and management of EoE in pediatric and adult patients. There were also several posters presented on dupliumab.
The findings from a phase 3 clinical trial for a potential EoE treatment called cendakimab (a biologic being developed by Bristol-Myers Squibb) were presented. Read more in our blog post here.
The local tolerability and efficacy of an extended release formulation of fluticasone (EP-104GI) to potentially treat EoE were presented as posters.
Many research posters related to eosinophilic GI disease were also presented throughout the conference. Just few highlights from the poster session are below. To access all of the posters, visit https://acgposters2024.eventscribe.net/
“Prevalence and Costs of Eosinophilic Esophagitis in the United States” is research that reports prevalence of EoE continues to rise rapidly in the United States. In 2022, the prevalence was estimated at 1 in 617 for those under 65 years old, and 1 in 1,562 for those 65 and older. When standardized to the overall U.S. population, the estimated prevalence is around 1 in 700 people. This represents a substantial 5-fold increase since 2009. The rising prevalence of EoE has led to a significant financial burden, with estimated annual healthcare costs reaching $1.32 billion in 2024. Given EoE’s growing prevalence and impact, it is now considered a commonly encountered condition that should be considered for patients with upper gastrointestinal symptoms.
“No Association Between Eosinophilic Esophagitis and Esophageal Cancer in United States Adults: A Case Control Study Co-incidence of EoE” described findings from one study cohort that EoE is not associated with development of esophageal cancer.
“Predictive Artificial Intelligence Analysis of Determinants of Health Outcomes in Hospitalized Patients with Eosinophilic Esophagitis” aimed to use predictive AI to look at factors that influence health outcomes of those hospitalized for EoE, highlighting the potential of AI to help healthcare providers allocate resources,
A number of posters about dupilumab (Dupixent®) were presented including favorable results from the Phase 3 KIDS study that assessed efficacy of this drug in children ages 1-12 years with improvements of histologic and endoscopic aspects of EoE up to week 52. Another poster, “Efficacy and Safety of Dupilumab in Patients With Eosinophilic Esophagitis: Pooled Analysis and a Systematic Review” explores the current research on dupilumab in EoE, presenting key findings from available studies suggesting this drug effectively induces histological remission and improves clinical outcomes in EoE patients. The safety profile appears favorable when compared to placebo, with low rates of total and serious adverse events.
“Exploring Demographic Variations in Eosinophilic Esophagitis: A Nationwide Study of Hospital Admissions From 2019-2023” highlights important racial and gender disparities in the incidence of eosinophilic esophagitis (EoE). Higher prevalence among White and Black populations compared to other racial groups suggests potential genetic or environmental factors may influence EoE risk, and the findings underscore the need for healthcare strategies that are tailored to specific patient populations to improve treatment outcomes and efficacy in managing this condition.
“Unmet Needs Among Patients with Eosinophilic Esophagitis Despite Biologic Use” describes a real-world analysis looked at patients with Eosinophilic Esophagitis (EoE) who use biologic medications as their main treatment. Even though the biologics improved their symptoms, the analysis found that most patients still had to adapt their eating behaviors.
“Risk of Barrett’s Esophagus in Eosinophilic Esophagitis: A Multi-Center Research Network Analysis” utilized a multi-institutional network to assess BE risk in individuals with EoE and found a higher risk of BE in patients with EoE in their study cohort.
“Understanding the Current State of Eosinophilic Esophagitis Research: Insights from ClinicalTrials.gov” reported the research landscape on Eosinophilic Esophagitis (EoE) is diverse, but heavily leans towards interventional studies, especially those exploring pharmacological interventions. The data also highlights an underrepresentation of federally funded research in the field. Given the prevalence of ongoing studies, this analysis serves as a valuable resource for clinicians, researchers, and policymakers engaged in EoE research and treatment.
“Role of TSLP in an Experimental Mouse Model of Eosinophilic Esophagitis” TSLP contributes to inflammation in Eosinophilic Esophagitis (EoE). When researchers induced EoE in mice, TSLP levels increased in the esophagus. To test TSLP’s importance, researchers gave the mice an antibody to block TSLP. This reduced the number of inflammatory cells (eosinophils) in the esophagus by 60%. It also decreased other signs of EoE, like thickening of the esophagus lining. These results suggest TSLP plays a key role in driving the inflammation and tissue changes seen in EoE. Targeting TSLP could lead to new treatment approaches for patients in the future.
“Family History of Eosinophilic Esophagitis or Other Eosinophilic Gastrointestinal Disease Is Not Associated With Non-Response to Topical Steroid Treatment in Eosinophilic Esophagitis.” This study examined whether clinical features or topical steroid treatment response differed between eosinophilic esophagitis (EoE) patients with and without a family history of EoE or other eosinophilic gastrointestinal diseases (EGID). In summary, they found that while EoE patients with a family history showed some initial presentation differences, family history itself did not emerge as a major risk factor for treatment outcomes.
“Seasons of Eosinophilic Esophagitis: Pinpointing the Summer Summit of Exacerbations” This study found significant seasonal variation in eosinophilic esophagitis (EoE) presentations, with a peak during summer months. These findings suggest aeroallergens may exacerbate EoE, highlighting the importance of considering seasonal allergen exposure when managing EoE in adult patients.
“Efficacy of Dupilumab on Facilitated Food Introduction in Eosinophilic Esophagitis” described the potential role of dupilumab in facilitating introduction of EoE trigger foods. Researchers conducted an open-label pilot study that evaluated the use of dupilumab in 21 patients with food-triggered eosinophilic esophagitis (EoE). Participants received dupilumab alongside standard EoE therapy and elimination of their trigger food, followed by a 12-month food reintroduction process. Dupilumab enabled the reintroduction of EoE trigger foods without exacerbating symptoms or compromising histological and endoscopic outcomes, effectively controlling symptoms, preserving histologic integrity, and preventing endoscopic progression. This suggests dupilumab has the potential to reduce the burden of dietary restrictions for EoE patients, thereby enhancing their quality of life.
“Predictors of Patients Receiving No Medication for Treatment of Eosinophilic Esophagitis in the United States: Data from the TARGET-EGIDS Cohort” describes a real-world analysis to evaluate predictors for absence of recorded medications and prescriptions prior to or following an initial EoE diagnosis. Among newly diagnosed patients with EoE, ~1 in 10 had no recorded pharmacologic therapy. Older patients and those without complications were more likely not to receive a medication for EoE. Further evaluation, including whether alternative treatments were used and outcomes, is warranted for this group.
“Gastroparesis in Patients With Eosinophilic Gastrointestinal Diseases is Associated With Increased Symptoms and Comorbid Conditions” In a study analyzing 526 participants from EGIDPartners.org (402 with EoE and 124 with non-EoE EGID), researchers found that 8% of participants had gastroparesis (GP), which is significantly higher than the 0.16% prevalence in the general U.S. population. GP was more prevalent in non-EoE EGID patients (16%) compared to EoE patients (5%), and patients with GP experienced increased symptoms including chest pain, abdominal pain, nausea, vomiting, and constipation. The study also revealed that EGID patients with GP were more likely to have atopic disorders (such as eczema and food allergies) and autoimmune or connective tissue disorders (like Raynaud’s and Ehlers Danlos syndrome). While the findings suggest a potential relationship between these conditions, further research is needed to establish a direct connection between EGIDs and gastroparesis.
“Effect of Budesonide Oral Suspension on Dysphagia Symptom Outcomes in Patients With Eosinophilic Esophagitis: A Pooled Post Hoc Analysis of Data From a Phase 2 and a Phase 3 Trial” This post hoc analysis of pooled data from phase 2 and 3 studies examined the efficacy of budesonide oral suspension (BOS) 2.0 mg twice daily versus placebo in 410 patients with eosinophilic esophagitis (EoE). Using an adapted methodology to analyze Dysphagia Symptom Questionnaire (DSQ) scores, the study found that patients treated with BOS (n=263) showed significantly greater improvements in both 14-day and 7-day prorated DSQ scores compared to placebo (n=147) at weeks 4, 8, and 12 of therapy. The treatment groups had similar baseline scores, but BOS-treated patients demonstrated significant symptom improvement as early as week 4. These findings, consistent with the prespecified analysis, reinforce the effectiveness of BOS 2.0 mg twice daily in managing dysphagia symptoms in EoE patients over a 12-week treatment period.
APFED’s Lisa Brunet (left) and Kristin Della Volpe, Associate Medical Director for PlatformQ Health/Medlive, with an APFED co-authored poster titled “Biologic Therapy for EoE: Can Continuing Medical Education Reduce Barriers to Adoption?”
An APFED co-authored poster on “Biologic Therapy for EoE: Can Continuing Medical Education Reduce Barriers to Adoption?”
Dr. Mirna Chehade of APFED’s Health Sciences Advisory Council with her blue ribbon for her poster “Dupilumab Efficacy in Children With Eosinophilic Esophagitis and Prior Use of or Prior Inadequate Response, Intolerance, or Contraindication to Swallowed Topical Corticosteroids: Results From the Phase 3 EoE KIDS Study”
Learn more about the 2024 ACG Annual Scientific Meeting & Postgraduate Course at acgmeetings.gi.org.
Join us June 26-28 in Raleigh-Durham, NC, or online for Eos Connection 2025!
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