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
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2 comments:
I think it is a great idea. Wish I had something like that when we first started out. Would take a little effort on our parts, but would be worth it to know we are helping someone.
I welcome your story, if you would like to share! Just email it to me, or you can post it here if you prefer. I can arrange to have it printed and copied and given to newly diagnosed patients.
The initial diagnosis and time thereafter is very overwhelming, as you guys all know!
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