May 29, 2013
APFED has changed my life and my youngest child's life! When he was diagnosed with EoE a few years ago I has never heard of it. Unfortunately, although his doctors had heard of EoE and diagnosed him, they (mostly GI and primary) were really not educated about the symptoms and what can be done to try to get some control over the disease. For years we have gone along blindly with doctors who would put him on steroids, take him off steroids, biopsy, repeat as they disregarded his complaints. Only 6 weeks ago I was referred to APFED. I cried when I realized that this group knew my child! He was not making things up or being sensitive and was in fact, in pain. I was allowing it to continue through my ignorance! I immediately ordered the children's book for my son and his classroom to better explain EoE. I also ordered brochures that I have handed out to everyone who deals with him so they can get a picture of what is going on and go to site themselves for more information. As a direct result of APFED my son now has his school (principal, nurse, counselor, nurse, etc) on his side; they realize his symptoms are real. His pain is real. This disease is serious! I cannot thank APFED enough for what they have done for my son! Knowledge is power! Although I admit to being overwhelmed, armed with this new knowledge I have already become a better advocate for my sons health so that he will no longer face day after day of pain. My only regret is not finding this site sooner.
Ways to make it better...
If I had to make changes to this organization, I would...
Have brochures at all GI and allergist offices.
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MY ROLE:Client Served