“I’m thriving socially, academically, and athletically facing challenges greater than most people in a lifetime.”
Eosinophilic Esophagitis(EOE), an auto-immune allergic condition, that makes it so I cannot consume more than a handful of foods. In elementary school, I was nauseated, eating less to not feel sick, losing weight and didn’t have the energy to attend social events or have fun. I endured countless doctor appointments and tests which finally led to an endoscopy, the first of eighteen and counting. Doctors were shocked that my healthy, strong, athletic body and stoic personality was hiding a rare medical condition. Diagnosis was only the beginning.
Initially, there were elimination diets, removing the "Top Eight" allergens: milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy. It felt overwhelming, but looking back, was the easiest of the trials over the last seven years. I couldn't eat food served at events. I packed food for everything. I tried to bring things that wouldn’t stand out as different. I was prepared and planned ahead out of necessity. I learned to read food labels, and found "replacement" ingredients so I could have the “same,” but safe, foods as those I enjoyed before. I felt better, but when I got the biopsy results of the endoscopy, it was a fail. While one trigger food may have been eliminated to improve some outward symptoms, others were still causing damage to my esophagus. Additional foods were eliminated; with each scope, each fail, more and more would be restricted.
Ten failed scopes and two years of trials with no improvement, the decision was made to eliminate everything. I was prescribed an amino acid formula. It was the worst thing I have ever tasted and smelled and at the worst time…. middle school. But, I drank it, I was determined to feel better. After finding out that insurance, including mine, doesn’t always cover medically necessary treatments such as this formula, costing thousands of dollars per month, I advocated both with local and federal legislators to support bills that increase accessibility to formula and prescriptions. When all I was ingesting were the worst “juice boxes” known to man, I got skilled at explaining my condition to other kids at the lunch table. It was awkward; I was a teenager not eating solid foods, but I learned life lessons. Being vulnerable and talking about my condition to other people, gave me the confidence, awareness and ability to educate others. I can rattle off a simple explanation that satisfies most people or more in-depth for those that are interested. In a society where food is an integral part of holidays and social relationships, I’ve worked towards finding other ways to celebrate, creating new traditions and experiences. I became truly aware of hidden disabilities and developed an understanding that everyone has struggles we aren’t always aware of or identify with.
My diet has expanded to about ten foods. No longer consuming formula, in order to pass food trials, I started taking a swallowed steroid. This off label treatment, paid out-of-pocket, has side effects and risks and is not very effective. I still feel symptoms at times because my body is still reacting; the steroid only creates a topical barrier inside my esophagus. In theory, I should be able to eat anything, but can't.
In May, the first FDA approved treatment became available. Dupixent would completely change my life, allowing me an unrestricted diet, however, my insurance won't cover it. Leading to my next challenge. If I am not approved for this medication before college, I have to rethink all my systems, how to buy, store, and cook food that is safe for me on my own. I will continue to fight for the addition of Dupixent to my treatment plan but whatever happens, I am confident that I can handle it because of what I've already endured. I’m thriving socially, academically, and athletically facing challenges greater than most people in a lifetime.
-Caleb C.