This article, the first in a two part series, seeks to raise awareness of a rare disease affecting children known as eosinophilic esophagitis (EoE or Eos for short), a chronic disease that causes inflammation in the esophagus. Part two examines how a rare disease like Eos Disorders is either not covered or poorly covered by medical insurance, and recent legislation to address this problem for EoE. A big thank you to our new science and environment intern Chelsea Mann for research and drafting this article.
Inflammation is a term regularly associated with common health complications. It is the most likely reason you experience joint pain after a morning run and the reason you miss work after developing bronchitis. While such complications may temporarily interfere with our daily lives, treatment options for inflammation are usually easily accessible and efficient. But for some people—especially children—inflammation can be a serious condition, particularly when this immune response prevents them from eating regular foods to obtain their basic nutrition.
Imagine an inflammatory disease that closes your throat, prohibits the consumption of food, and cannot be treated with simple medications. This type of inflammation is caused by eosinophils (white blood cells) in response to allergies. White blood cells are typically helpful, but high quantities of white blood cells in areas other than the blood and intestinal tract can cause major issues. While we often take it for granted, the esophagus is a critical organ. It is the body’s digestive highway and transports food from the mouth and throat to your stomach. The inflammatory response that is triggered by an elevation of white blood cells in people with Eos disorders creates a roadblock on this digestive highway, disrupting crucial function and making it near impossible to safely consume and digest food.
Eosinophilic esophagitis largely affects infants and children. According to most medical descriptions of EoE, the symptoms include nausea, regurgitation, vomiting, abdominal pain and reflux. While rare, eosinophilic esophagitis is one of the most prevalent esophageal diseases and causes of dysphagia or difficulty swallowing, and food being impacted in the esophagus. It is a parent’s worst nightmare to have a child with the potential to choke every time he or she eats, while also being deprived of the basic nutrients he or she needs to live and thrive. Children’s Hospital of Philadelphia’s webpage on the disease provides more detailed information about the signs and symptoms of eosinophilic esophagitis in infants and children.