eosinophilic esophagitis

This is a narrative written by big sister, Madisyn.

Almost every family in America sits around the dinner table and has a conversation about their day. Some of us look forward to it and some of us do not. Being with my family is one of my favorite things, and getting to sit down and listen to each other’s day was something I looked forward to each evening. Some of my best memories were made just sitting around the table as a family. Laughs were shared, water was spit across the table, forks were dropped on the floor, and we just had a good time, but one day that all changed.

My family consists of four people. We have my mom, my dad, and my little sister, Lyndsee. Lyndsee and I are twenty-one months apart, so we were born to be lifelong best friends. She is one of the funniest and spunkiest people I know, and I love her with all my heart. One day we were getting ready for Super Bowl L. The M&M company was kind enough to send us a gigantic bag of Panthers M&M’s because our family loves the candy, and the tasty treat was the perfect way to root for our home team. While Lyndsee was eating an M&M, she felt like it was stuck in her esophagus. My mom and she rushed to the emergency room, and Lyndsee was crying as anxiety overwhelmed her body. Lyndsee was taken back quickly and given a liquid solution that would allow the M&M to go down the esophagus, but ultimately had to have emergency surgery to have her esophagus stretched with a balloon device.

We continued having our family dinners like usual, but Lyndsee started eating less and food impactions were happening more frequently. None of us knew what was going on, so we went from doctor to doctor with no definite answers.  Finally, after two months of going through tests, a doctor at Brenner’s Children’s Hospital told us Lyndsee has a rare disease called Eosinophilic Esophagitis (EoE). This diagnosis changed our family dynamic forever.

EoE is a disease where the body thinks food is a parasite. This description basically means she is allergic to every food on the planet. Everything over the last few years started making sense at this point. We figured out why Lyndsee was not eating as she used too, and why she was always complaining about food impactions. Approximately 150,000 people have been diagnosed with EoE in the past twenty years, so it is really difficult to find a doctor that knows exactly how to treat Lyndsee or EoE in general.

This diagnosis has made my family and I realize that our entire livelihood revolves around food. When you go to a birthday party you expect to see pizza, cake, and ice cream. While visiting new places most of us enjoy finding unique restaurants with good food. Even just walking around on the streets, many are holding something to eat or sipping on a beverage. Just imagine if you walked around and smelled all this mouthwatering food, or heard the sizzling of grills cooking delicious hot dogs and hamburgers, but your body cannot have any of it because it will cause harm to not only your esophagus but other parts of your body.

Family dinners are no longer something we do because we do not want Lyndsee just staring at her family eating food. We do not get that aspect of laughing and sharing the funny moments at the dinner table as you see in all the movies and TV shows. We do not have the good and deep discussions like we used to before Lyndsee’s diagnosis. Next time you are dreading a family dinner, please think of all the laughs and good conversations you will have with your family that you will later share with your own kids. One day those moments could all be gone in the blink of an eye.