In this video, Jessica of Chadds Ford, Pennsylvania, shares her journey living with eosinophilic esophagitis (EOE), a chronic inflammatory condition that causes difficulty swallowing and food impactions. After years of symptoms that were initially treated as acid reflux, a biopsy finally confirmed her diagnosis.
Jessica describes the challenges of living with a lifelong condition, including ineffective early treatments and ongoing barriers to accessing specialty medications. She also encourages others living with EOE to advocate for themselves and connect with supportive communities like the American Partnership for Eosinophilic Disorders.
This video is sponsored by Takeda.
Transcript:
I'm Jessica. I live in Chadds Ford, Pennsylvania, and I'm living with eosinophilic esophagitis.
EOE is a chronic inflammatory condition where the esophagus becomes irritated by eosinophils, which causes inflammation and difficulty swallowing.
At my first job out of college, I noticed I was randomly choking on water. Then later when I was eating, food would get stuck multiple times a week.
It would get stuck in my esophagus, and I would have to sit there calmly and wait for it to go down.
Small things that normally shouldn't get stuck were getting stuck.
After a while, it became clear that it was impacting my quality of life. So I went to a GI doctor, and after an endoscopy he told me I had a lot of ulcers and needed to change my diet for about a month to see if that would clear everything up.
I did that and my results came back better, and I was diagnosed with GERD, or acid reflux, and I was put on PPIs like pantoprazole and omeprazole.
I spent a lot of time on those medications. I wanted more answers, so the second provider I went to performed a biopsy and let me know that I had eosinophilic esophagitis.
At that point in time they told me it was rare and that I could try steroids. None of that showed valuable results for me. I was still having impactions. I was still constantly choking on water, which was terrifying, and it wasn't until a newer medication
came out that I finally went into remission and regained my quality of life.
The drug I'm on is a specialty medication, which means you have to work with a specialty pharmacy to it delivered to you. With specialty medications there are a lot of delays and challenges because you're working with the healthcare provider, the insurance company, and the specialty pharmacy. There are a lot of pain points for the patient.
About every three months there's an issue. My advice to policymakers
and health plans is that this is a chronic illness that lasts for life. Requiring constant pre-authorizations for dose and quantity creates delays for patients.
Having medication that is accessible and affordable would be a blessing.
What I'd say to others newly diagnosed with EOE is: don't give up. There is a lot of research and information available, and it's important to advocate for yourself.
I would absolutely recommend that anyone with EOE participate or volunteer with the American Partnership for Eosinophilic Disorders. There is a great community and many resources that help support your journey.
I'm Jessica, and I'm living with eosinophilic esophagitis.
AMCP offers a wide variety of educational opportunities, from events and webinars to online training.
