Reaching out to new families

To all EoE 'veterans' -

Anyone interested in reaching out to other families struggling with a NEW diagnosis of EoE? As I interact with newly diagnosed patients and families, I often see the same basic concerns played out: how are we going to deal with this? what am I going to feed him/her? how will I ever learn all of the words that can mean 'milk' or 'soy' is an ingredient?

I'd like to put together a compilation of "Eos stories" to hand out to newly diangosed patients and families. Each story would be like a short family biography, as it relates to the family's experience with EoE. Those of you who are interested in participating can write your own (perhaps just a short paragraph?) - you can make it as personal/general as you like... include names and contact info or not.

My hope is that sharing these stories will help newly diagnosed families feel more connected and less alone - let them know that there are REAL families living in the same area who have been through (and are still going through!) this experience.

What do you guys think?

- Katy

Maybe we should all move to Utah

My best friend in Utah thought of me as she read this article in her local paper. It's nice to know insurance somewhere is covering our needed, and costly, formula.
http://www.heraldextra.com/content/view/301689/79/
Check it out...maybe we could start something like that here.
Renee