Larchmont Family Visits DC to Discuss Rare Disease with Legislators

Bonnie Weinbach and her son Aaron traveled from their home in Larchmont last week to the nation’s capital to meet with legislators including Rep. Nita Lowey (D-NY), and the staff of Sen. Chuck Schumer (D-NY), Sen. Kirsten Gillibrand, and Rep. Eliot Engel (D-NY).

Aaron Weinbach, 8, suffered for several years before being diagnosed with eosinophilic esophagitis (EoE), a disease that affects his esophagus (the tube connecting the mouth to the stomach). As a result, Aaron’s ability to eat is impacted.

Weinbach and several families living with eosinophil associated diseases got together for “Capitol Hill Day” during National Eosinophil Awareness Week according to a release from American Partnership for Eosinophilic Disorders. With a mission of educating legislators about the diseases and press for federal funding for research,

Eosinophil associated diseases are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues and/or organs, which causes inflammation and damage.

Eosinophil associated diseases, particularly EoE, are rapidly emerging as a healthcare problem worldwide. All too often patients aren’t given an accurate diagnosis for years, or are misdiagnosed, due to the lack of information or awareness of these diseases.

Diagnosis can be made only through tissue biopsies, an invasive procedure that requires anesthesia.These diseases are chronic and often debilitating. Currently, there is no FDA-approved therapy for most eosinophil associated diseases and there is no cure.

Weinbach has hope that the meetings will lead to changes for her son and others living with eosinophil associated diseases. “I hope to see federal funding for research into better treatments, less invasive testing to diagnose and monitor these diseases and hopefully, one day, a cure,” she said.

– Leslie Yager (source: patch.com)