For most of her life, Jori Kodroff has been unable to eat food that most people take for granted. The culprit: eosinophilic gastrointestinal disorder (EGID), a disease which triggers a severe allergic response to food, causing pain, vomiting and other debilitating symptoms. It’s a difficult disease to live with, but Jori and her family are committed to finding a cure and making life better for all who suffer.
Jori was diagnosed with EGID when she was 10 years old. Soon after the diagnosis, her diet was limited and her care team at Cincinnati Children’s tried several treatment options, including medications and steroids.
Doctors recommended she abstain from all solid food and begin a diet of only elemental formula, a pure form of protein, free of allergens and loaded with essential vitamins and nutrients.
The good news: Eventually, Jori found some foods her body could tolerate. The bad news: For years she was stuck eating the same foods – apples, pears, bananas, broccoli, potatoes and shrimp.
“I ate the same thing every single day for years and was not able to pass any new foods without my eosinophils rising,” said Jori.
As she’s gotten older, Jori has learned to live with her disease, which means packing her lunch for work and vigorously reviewing back-of-the-box ingredients while shopping at the grocery store.
Clinical Trial, Additional Foods
In 2016 she began participating in a National Institutes of Health (NIH) eosinophil clinical trial in Washington, D.C. From weekly to monthly to bi-monthly visits, Jori estimates she’s been there 30 times in the last two years.
“Since starting the clinical trial, my levels are at zero and I have been able to add a lot of new things, such as watermelon, berries, squash, asparagus, Brussels sprouts, rice, cocoa, pork, and beef,” said Jori. “While I have expanded my diet, I unfortunately still suffer from symptoms ranging from bad stomach aches, to nausea and vomiting.”
Unable to eat any real desserts in the past without getting sick, Jori describes chocolate as “a fun one” to add to her diet.
“I found a chocolate sorbet that tastes just like ice cream to me,” she said.
So while still limited, her diet has expanded and now includes vegan cheese, which she can add to a variety of meals, and she drinks Neocate for breakfast every day. Lunch and dinner are usually some mix of sautéed vegetables with quinoa or rice, roasted vegetables, spaghetti squash, chicken soup with rice, etc.
“I still bring my lunch to work every day because it's still so difficult to eat out and when I do find something on the menu, nine times out of 10 I get sick afterwards,” she said.
Living a Normal Life
Jori graduated from the University of Missouri in 2014 and now lives in Los Angeles and does media / marketing for a movie studio. She tries to live as normal of a life as she can with EGID, such as hanging out with friends, volunteering, seeing movies, going to concerts or practicing yoga.
“Living with this disease is a roller coaster. It is very unpredictable and between that and the food it makes every day a challenge,” said Jori. “The disease has always made the social aspect of my life very difficult as everything revolves around food.
“A lot of ups and downs have come with it and I know all of the trials and tribulations have made me a stronger person in the end.”