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Stephanie91

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APFED
April 18, 2014

I can hardly believe that it has been almost a year since I was referred to APFED. My son had been diagnosed with EoE a few years previous but both his doctor and myself were not knowledgeable about the true nature of this disease. My son (now 9) was constantly sick. I was shocked as I began to ready through APFED literature and watch their YouTube videos. These people were describing my son!!!

I was blessed to be able to attend the APFED conference last year in Philly. I was overwhelmed to say the least by the amount of information available. I left there armed with a real plan of what I needed to do for my child. On my return home we met with his dietician and his allergist (who were new for us and had told me about APFED) and what he was saying about treatment options made sense. My son does have a feeding tube. Prior to learning from APFED what that actually entailed I was beyond sated of this step. I can now say it has been a blessing. My son is now growing and no longer has symptoms of malnutrition.

As if that isn't enough, APFEDs step by step school resource info for IEPs has been a lifesaver. It is very clear and comprehensive about reasonable accommodations the school can make to help my son be a successful student. There are so many aspects of APFED that I have used or referred friends, family and teachers to that I know I am missing some part that I use. Just know that you will never be alone in any aspect of this disease once you come to the APFED website!!!

Ways to make it better...

If I had to make changes to this organization, I would...

Have a section for single parents dealing with EGIDs. There are unique things that singles have to navigate (courts, visitation, juggling work when eos child is sick and no significant other to help).

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

MY ROLE:
Client Served

APFED
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.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served