Don’t forget to check out Parts 1 and 2 of our interview, where we discussed APFED, eosinophilic esophagitis (EOE), and Lori’s diagnostic process. Today, in the final portion of the interview, we’re discussing Dupixent, EoE myths, and advice from Lori and Mary Jo.

Addressing Eosinophilic Esophagitis Myths

One especially important part of raising awareness is addressing the myths and inaccuracies around eosinophilic esophagitis. During our discussion, Lori and Mary Jo laid out four clear myths that should be combatted:

EoE cannot be that bad since it is an invisible illness. Mary Jo first shares that some people struggle to understand the physical and mental toll of EoE since it is invisible; the symptoms do not necessarily appear on the outside. Lori agrees, sharing:

“People don’t understand the chaos going on inside of the body. I’m told that I look so healthy, or thin, I shouldn’t be complaining. Others don’t understand the mental toll that comes along with rare disease and chronic illness. Over the years I have felt angry, resentful, and sometimes completely isolated. Talking about mental health and chronic disease is just as important as talking about treatments because it can be a real challenge to cope with EoE.

A few years ago, I was at a wedding and everyone at the table was pressuring me to eat the wedding cake. After saying no a few times, I finally said I couldn’t eat the cake for medical reasons, and then I got some weird looks from people. I remember feeling of isolated, and a little resentment towards everyone for being able to eat the cake. I just wanted to eat the cake, but I couldn’t.”

A food allergy means that you must have a life-threatening reaction. Lori shares that “food allergy” often makes people think about anaphylaxis, but that there are different levels of “allergy.” She says that if she eats a trigger food, she won’t die, but it will make her sick. Having a level of allergy, and experiencing long-term responses, does not mean someone has a preference, but that they have a very real health concern.

People can grow out of EoE. One question that Lori says she gets a lot is how long EoE lasts. Much like her doctor explained that it would go away, there is a lack of understanding regarding how EoE works. As Mary Jo shared, it is important for people to recognize that they cannot  “grow out” of EoE and that they cannot simply “cope” with symptoms as a mean to manage it. This is a medical condition which requires oversight.

EoE is a kind of eating disorder. When Lori was at her sickest and thinnest, she explains, that was when people were most praising her weight. She shares:

“I’ve gotten very thin in the past but people brush it off as me being a picky eater or not wanting to eat. The worst thing is having someone misjudge you about that or feel like it’s some sort of eating disorder. I want to eat the food, but I will get very sick.”

Dupixent

In May 2022, the FDA approved Dupixent for patients aged 12+ with eosinophilic esophagitis. Dupixent is a monoclonal antibody which blocks interleukin 4 (IL-4) and interleukin 13 (IL-13), both part of the inflammatory pathway. Currently, Dupixent is used for EoE as well as other conditions such as chronic rhinosinusitis with nasal polyps, moderate-to-severe asthma, and moderate-to-severe atopic dermatitis.

So why is this such huge news for the EoE community? In addition to being the first FDA approved treatment for EoE, Mary Jo explains:

“The approval of Dupixent is the result of so many years of hard work from the medical, scientific, and patient communities. This is really beneficial because indicated drug approval makes medication more accessible. Many people are unable to access off-label medication due to insurance denials, so this fills a huge unmet need. This also reinforces that when we work together in partnership, we succeed. When the news hit, there was so much excitement. I was getting calls and text messages of people just sharing their happiness.”

Lori agrees, sharing that this is a fantastic option for those within this community. She says:

“Finally, right?! Since I started my journey fifteen years ago, there has been no option like Dupixent. It was ‘on the horizon,’ but now it is finally approved. I’m grateful that a company out there is looking out for the small rare disease community.”

Currently, Lori is not taking Dupixent as a treatment for her eosinophilic esophagitis, but she is open to the idea in the future after speaking with her doctor. While this is a great start, Mary Jo also hopes additional research will bring even more therapeutic options in the future.

Final Thoughts and Advice

At the end of our talk, Lori and Mary Jo both had some final words to share with those who might be newly diagnosed. The first is to pursue a specialist or a doctor with some depth of knowledge. Lori shares:

“You have to advocate for yourself with your doctors. Have reinforcements. Bring friends. Don’t be afraid to ask for a different doctor if yours is not working for you. When you have other doctors, tell them about your EoE. I also have Hashimoto’s disease and interstitial cystitis, and I’ve had to explain EoE to my endocrinologist, my regular GP, my gynecologist. It can make tests come back differently so you have to be able to explain it.”

The next piece of advice is to ensure that you have adequate support, whether that is through online support groups or therapists. Therapists can help you handle any stress or concern relating to your condition. Online support groups are also great places to vent, ask questions, and learn. Lori says:

“The more online groups you’re in, the more you can find out. Look up APFED or Power to the Patients – anywhere you can find information and learn how to better advocate for yourself.”

Mary Jo agrees, citing online communities as places to really learn about patient experiences with EoE and other conditions. She says:

“Read what you can about your condition. APFED has a great toolkit that really walks patients through a new diagnosis: terminology, specialists, current treatment options, what’s in the pipeline. So learn about it. Schedule follow-up care. Network. Reach out and engage with others, especially if you’ve been feeling isolated or misunderstood.”

If you are looking to help find support, take a look at these helpful resources from APFED.