Since 2007, the third week of May has been nationally recognized as National Eosinophilic Awareness Week.

This week is meaningful to our family, because we have a child who lives with an eosinophilic gastrointestinal disease. These disorders are characterized by having above-normal amounts of eosinophils, a type of white blood cell, in one or more places in the digestive system, tissues and/or organs. These diseases are chronic with no cure, or approved FDA treatment. Testing for these diseases are invasive, requiring repeated endoscopies.

Symptoms include, but are not limited to, vomiting, diarrhea, failure to thrive, dysphasia and abdominal pain. Our daughter, Alexia, 3, lives with eosinophilic esophagitis (EoE), affecting the esophagus. This disease is rare and frequently misdiagnosed because of lack of awareness. Many patients go years with debilitating symptoms and no diagnosis. Symptoms generally present themselves by food.

There are no tests to detect what causes the eosinophils to infiltrate Alexia’s esophagus. Reactions from food are often delayed, not presenting themselves for up to two weeks.

Often patients will go on elimination diets, or, in extreme cases, elemental diets. Such patients solely depend on amino acid medical formula, which is very expensive and not always covered by insurance.

In August 2011, my daughter went on the elemental diet, and her symptoms went into remission. Since then, we have introduced seven new foods into her diet.

Having a child with EoE is challenging. We live in a society where everything social involves food. We find it difficult to enjoy social functions. Often, we avoid functions or make quick appearances.

My goal is to spread awareness, so patients might not have to suffer through many tests, and, more importantly, painful symptoms before an accurate diagnosis is made.

Megan Stone

Winslow

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