History

There is a founding principle within APFED: “We Get It!” And we do. My son has eosinophilic gastroenteritis (EGE). Back in 2000, we struggled with a sick 1 year old incapable of telling us what was wrong. Charlie saw doctor after doctor and underwent test after test with no apparent reason for his vomiting, pain, and screaming fits. He spiraled downhill until he wound up in the hospital on total parenteral nutrition (TPN, or intravenous nutrition) at 16 months old, still without a diagnosis. Six months later, the strange word eosinophilic was mentioned to us. Finally – a diagnosis to go on and a place to begin.

I was told not to look up EGE because I would get nothing but misinformation from the “unreliable” Internet. I found myself surrounded by a group of mothers just like me. Sadly, our stories were all the same. Sadder still, our numbers were increasing rapidly. I began to read medical journal articles and armed myself with a medical dictionary and no fear of asking my physicians questions to gain better understanding of this poorly understood disease. APFED was born out of necessity.

Timeline of APFED’s Key Milestones