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kelyn01

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APFED
June 20, 2011

Last summer my then 2 year old son was diagnosed with Eosinophilic Esophagitis. I will never forget that day, ever. When the doctor came to speak to us while our son was in recovery and I remember her saying, "Good news, your son's colon looks great, no evidence of Celiac Disease. However your son has Eosinophilic Esophagitis." I asked her to repeat it, because she said it so quickly and nonchalantly. I still didn't understand her after the second time, so I asked her to spell it on a hosptial paper that I had in my hand. We had two weeks to stew with this new information, google it and research it, freak out over it before a follow up with the GI. Amazingly and sadly a childhood friend of my husband, her son had been diagnosed 6 months prior. The first thing she said to me when we talked was to stop googling and go straight to the APFED.org website. She said it was the only website she would refer to and what her son's doctor would refer to for accurate information. This made a world of difference. Then about 7 months went by, my son had another endoscopy. My son's eosinophil count came down, but not enough, so we started the elimination diet per the doctor. This is when things got even more tough for me and no one around me (sometimes even my loving, dear husband) couldn't understand my son's needs. I was poking around the APFED.org website and stumbled upon the local support group section. I decided that I needed reinforcements and called the contact person for my local group. It's been the best decision ever. These parents have been so welcoming. We even had our 2nd annual EOS walk. My son alone raised over $500 dollars that all went to APFED.org for their mission of Education, Awareness and Research of Eosinophil associated disorders. I can't stress enough how valuable this group has been and we intend to save up and go to next year's 10th Annual APFED conference!! Everyone and anyone that will listen, the first thing I do is tell them how crucial APFED.org information has been and continues to be for my family, other families and the medical community affected by and dealing with these debilitating eosinophilic disorders.

Photos

The Great!

I've personally experienced the results of this organization in...

many positive ways. Anywhere from gathering more information just to explain and educate grandparents to doctors about what an eosinophil is and how it can affect several areas of the body. To finding my local support group that has helped me further understand the disorder and how different every eosinophilic case really is. It's helped me put things in perspective and to thank my lucky stars that my son's case is not as severe as it could be (for now). APFED.org has been a vaulable resource!

Ways to make it better...

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

I honestly for now can't think of anything. APFED.org is doing great work on keeping everyone informed and up to date on the newest, leading research on eosionphilic disorders.

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

What one change could this group make that would improve your volunteer experience?

Cant think of anything. I would forever volunteer for APFED.org. It's the least I could do for all the support it has provided to my family.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

My local support group that I found through APFED.org website has truly been a great experience. Although I hate that any of us has to deal with this horrible disease, it's been a great comfort knowing that my family is not alone in this EOS fight. It has taught me there is no better advocate for my 3 year old than being educated on eosinophilic disorders and speaking up for his rights since, for now, he doesn't have his own voice. I hope with my involvement, donations and advertisement of APFED.org, one day my son will grow into a well adjusted, healthy man that will one day see a cure for his disease. I truly believe this will happen with the all the hardwork APFED.org continues to do.

How did this volunteer experience make you feel?

Not enough words or space you have provided, can truly express how forever grateful I am to APFED.org.

When was your last experience with this nonprofit?

2011

MY ROLE:
Volunteer & I have been part of a local support group and several weeks ago during National Eosinophilic Week our group had a 2nd Annual EOS Walk. All proceeds earned went directly to APFED.org to help with their mission to educate, spread awareness and for research .