There is a founding principle within APFED. “We Get It.”  And we do.

My own son has Eosinophilic Gastroenteritis (EGE). Back in 2000, we struggled with a sick one 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 this strange word (Eosinophilic) was said to us. Finally – a diagnosis to go on and a place to begin.

I was told not to look up EGE. 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 reading medical journal articles, and armed with a medical dictionary and no fear of asking my physicians questions to gain a better understanding of this poorly understood disease.

APFED was born as an idea in late September 2001 with the intent to provide support, reliable information and spread awareness. We incorporated in December 2001 and received our 501c3 status in June of 2002.

APFED was created to become a place where families (adults and kids) could come together to share knowledge, educate themselves, arm themselves with credible information, meet and support one another, raise public awareness and generate research dollars. APFED would be that glimmer of hope. A four-point mission of education, awareness, support and research, each being no more important than the other.

Although my own child suffers from EGE, is now G-tube and steroid dependent, he’s doing okay. APFED is not about my child or EGE. It is about filling a gap for all people, all over the world who suffers from eosinophilic diseases and disorders.

All of the volunteers who staff APFED are parents and patients themselves. We all have a deep desire to enhance the lives of those suffering and waiting for help. We do ‘get it’ and we strive to make sure all new patients do too.