Food has the power to change lives, to spark connection and understanding, to raise cultural awareness, and to bring people together. Nobody knows this better than 48-year-old Lori, who spent nearly sixteen years cultivating a “food obsession” as a personal chef. She shares:

“I grew up in the countryside in Central New York in the 70s and 80s, and there weren’t many places to go out to eat. The nearest grocery store was a 25-minute drive. So my journey with food began at a very young age by learning how to grow it, hunt it, cook it and eat it.”

But 15 years ago, in 2007, Lori faced an unexpected obstacle when she was diagnosed with eosinophilic esophagitis (EoE), a chronic immune-mediated disease in which the body misinterprets certain foods or products as allergens. Suddenly, she found herself on a journey that directly contrasted her relationship with food – one which would require lots of elimination diets and trial and error.

In May 2022, the U.S. Food and Drug Administration (FDA) approved Dupixent (dupilumab) for the treatment of individuals with EoE. This historic approval marks the first-ever approved EoE treatment.

Recently, I sat down with Lori, as well as Mary Jo Strobel, the Executive Director of the American Partnership for Eosinophilic Disorders (APFED), to discuss what eosinophilic esophagitis is, the Dupixent approval, the need for increased awareness and research, and what advice they would give to those within this community.

About Eosinophilic Esophagitis (EoE)

Eosinophilic esophagitis (EoE) is a chronic immune-mediated disease in which too many eosinophils are present in the esophagus. According to Mary Jo:

“Eosinophils are a type of white blood cell which are part of the immune system. There are many reasons why people might have too many eosinophils, like infections and allergies. But if too many are present without a known cause, it may be because of an eosinophil-associated disease. The eosinophils can cause inflammation and damage to surrounding tissues and organs.”

In the case of EoE, individuals have immune hypersensitivity to particular foods or environmental allergens. Lori explains:

“My body misinterprets the food I eat as allergens and, to protect my esophagus from those ‘allergens,’ it sends those eosinophils to line and protect the inside of my esophagus. If I keep eating that food, my body keeps sending white blood cells until it closes off the esophagus.”

Many individuals with EoE often have other allergic conditions such as eczema or asthma. Symptoms associated with EoE can include:

• Dysphagia (difficulty swallowing)
• Nausea and vomiting
• Unintended weight loss
• Stomach pain
• Appetite loss
• Poor growth
• Food impaction (food getting stuck in the throat)
• Malnutrition

There are many people who believe that it is possible to self-manage their symptoms, or simply adapt to the impact of the symptoms. However, Mary Jo stresses, it is imperative for people to pursue care:

“This is a chronic condition and it needs ongoing medical treatment. Research to date on the natural course of EoE indicates that when left untreated, it can cause esophageal remodeling and dysfunction, such as scarring and narrowing, making it difficult to swallow.

Mary Jo Strobel and her Commitment to Patient Advocacy

For nearly 24 years, Mary Jo Strobel has been working to make a change in the lives of those impacted by allergic or immune-mediated conditions. She has a background in communications and nonprofit patient advocacy which she honed through her position at the Food Allergy and Anaphylaxis Network (FAAN). When the American Partnership for Eosinophilic Disorders (APFED) first formed in December 2001, Mary Jo was working with FAAN – but she took notice of this new organization. The opportunity to provide a trusted resource for those with eosinophilic esophagitis excited her.

Her decision to become involved with APFED occurred after her niece was diagnosed with eosinophilic esophagitis. Mary Jo explains:

“Joining APFED and contributing to its mission has been incredibly meaningful to me. In addition to my niece, I just had another family member diagnosed and three others who have struggled with issues relating to swallowing.”

Ten years ago, Mary Jo became the first APFED Executive Director. As Executive Director, she plays a role in many areas of the organization. For example, in terms of research, Mary Jo gathers and communicates patient perspectives and unmet needs to inform researchers; this helps research teams design meaningful studies. She also disseminates information on research efforts to the surrounding community, raises funds to support research grants, and has co-authored multiple works.

In terms of advocacy, Mary Jo advocates for patient outcomes on the state and federal levels. Finally, for education and awareness, she creates materials and awareness campaigns to teach people about eosinophilic disorders. She shares:

“One of the best ways we educate and cultivate peer support is through our Patient Conference each July. This conference brings families together to help them learn and connect with one another. On average, we welcome 200 attendees each year.”

Throughout her time at APFED, Mary Jo has experienced both challenges and rewards. She explains that operating within the rare disease space can be difficult at times; when a disease isn’t widely known, many patients and families feel isolated or alone. However, she and her team at APFED have done an amazing job in raising awareness. Throughout her time as Executive Director, APFED has helped establish and grow National Eosinophil Awareness Week, build a stronger community, and spearhead efforts to establish ICD codes for subsets of eosinophilic diseases.

What is APFED?

APFED is a 501(c)(3) nonprofit founded by the parents of young children with eosinophilic conditions. According to the APFED website, its mission is:

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. With education and awareness, accuracy of diagnosis improves, suffering decreases, a supportive community develops, and research funding grows.

APFED offers a number of ways for those within the community to take action, such as clinical trial information, patient registries, events, and research surveys. To learn more about APFED and its valuable resources, head here.

Future Goals

Moving forward, Mary Jo only hopes to keep cultivating change and progress within this realm. One of her main goals is to ensure that patients and their families remain engaged. She explains:

“Their involvement really makes these scientific advances possible. Whether people are filling out surveys and questionnaires, raising funds, or sharing insights, they are helping to improve the entire diagnostic process and therapeutic landscape. Their engagement also raises awareness so that these conditions can be more easily recognized and serves to advocate for legislation to improve access to care.”

Outside of patient and family engagement, Mary Jo hopes that APFED will be able to address some of the potential barriers to treatment. What are some of these barriers? She shares:

“One barrier could be proximity to specialists who are familiar with eosinophilic esophagitis and other eosinophil-associated diseases and can offer appropriate treatment options. Another barrier is the challenge of transitioning from childhood to adult care. It isn’t just children getting diagnosed with eosinophilic disorders.

We want to help provide the education to adult providers who can, in turn, treat adults presenting with these conditions and be ready for the group of patients that will be transitioning. Our next step will be to focus on where people encounter barriers to treatment and to advocate for transformative changes to eliminate those barriers. By working together, we can make a meaningful difference and we can succeed.”

Join us in Part 2, where Lori explains her diagnostic journey with eosinophilic esophagitis, as well as her advocacy work. Then, in Part 3, we will discuss EoE myths, as well as Lori and Mary Jo’s advice for those within the EoE community.