Education is empowering. When I think of Apfed.org I think of how this
Group has help me educate future teachers in America. I feel blessed and honored to have this opportunity. Thank you Apfed.org.
APFED is an amazing resource and timeless repository of information! The website is full of great information to help my family.
Apfed is one of those most helpful and knowledgeable organizations Ive ever dealt with. When my daughter was first diagnosed with EoE, they reached right out to me. They offered information, support and friendship. Such an awesome team of people!!!
We just went to our first APFED conference in San Diego. It was such a great experience! We learned so much and met new families, got safe foods, snacks and samples and really enjoyed our time! Besides the wonderful conference they put on, APFED has a great website to refer family and friends to re eosinophilic diseases. Besides all of the before mentioned, we are thankful for the fundraising they do to raise awareness and find a cure!
My nephew has EoE, and has benefited so much from Apfed. He attends the annual conference (I have, too!) and values the time he is able to spend with other kids that have similar disorders. I have learned so much through their education at the conferences, newsletters and their staff is wonderful. My experience with this nonprofit has exceeded all my expectations, and I will continue to support their efforts!
Love apfed.org. I have learned so much about my daughter's diagnosis of Eosinophilic Esophagus and Colitis. This website helped me to write a 504 plan for her; she is a junior in high school. Everything in the 504 plan was accepted by the school. I have also been able to educate the school, friends, and family because of apfed.org.
My 15 year old daughter started having stomach pains in October of 2014. As the month went on, they pains got worse and more often. I would have to take her home from school. We took her to our general practitioner and he scheduled her for an ultrasound and blood work, thinking she had endometriosis. Every thing came back negative. Finally, after two months, we took her to the emergency room where a CT scan and another ultrasound were performed. The only finding was being constipated. She also started vomiting every time she ate. She did a clean out; didn't help. Took her to an OB/GYN and a GI. They both recommended another clean out. Still didn't help and her esophagus started closing off when she ate certain foods, potatoes and strawberries. The GI finally consented to doing an endoscopy and colonoscopy. She was on a ppi at the time. The biopsy came back with 50+ eos in her esophagus and colon; hence, the diagnosis. This was in January 2015. Since then she has gone to the point of not being able to eat anything. She just vomits it. Even if she doesn't eat, she vomits her spit and bile. She has tried an NG tube and an NJ tube for feeding and they have not worked. She was diagnosed with motility problems and gastroparesis the first part of June 2015. She was also passing out or nearly passing out. She was diagnosed with POTS and dysautonomia,
APFED is a fantastic resource! It has helped me tremendously, from learning about just what eosinophilic esophagitis (EoE) is, to advocacy resources (such as information about 504s for school). It's helped me help my daughter learn about EoE as it is a confusing disorder and is confusing to try to explain to a small child. I'd be lost without this resource!
I am a mother of three children with EoE and also manage this disease as well. APFED is an incredible resource patients and doctors alike. I have attended two conferences and gathered valuable information concerning eosinophilic disease. APFED provided excellent and timely information to my husband and I as we were pushing for elemental formula coverage legislation in our state this past year, and it was critical in our efforts and communications with state legislators.
This organization has been a life saver to say the least! I was at a complete loss until I discovered such a welcoming and helpful organization. Not only have questions been answered, but lifetime friendships have been formed. This organization is filled with real people who live the same lifestyle... They "get it" and been through it. I'm not good with words, wish I could better describe how amazing everyone is, how helpful, how life changing this organization truly is. I'm so very thankful to know I'm not alone in this... To know there are others living the same and willing to help as much as they can, even going out of their own way to help. I have never known an organization so passionate about helping others and making others know and feel that they are not alone in their journey. To add to their wonderful warmth, they also provide medical updates and helpful education for not only families, but for others to understand our lifestyle. APFED is amazing and we would be lost without all those behind the name of the organization. Thank you APFED for being a part of my family.
My son was diagnosed with Eosinophilic Esophagitis (and suspected lower EGIDs) when he was 10 months old. I had never even HEARD of Eosinophilic diseases.
So, naturally, the first thing you do when a new diagnosis is thrown at you.... I started googling this strange new disease. Medical sites had some information, but I still felt like I was in a very grey area between mass confusion and total clarity.
I came across the APFED site and immediately it became my go-to for information. The information on the page was what made me realize that our specialist at the time was not well versed in the disease and that we needed to find better help for my son. It also helped me to find my son's current team.
If I EVER have a question about my son's disease, I head on over to the APFED wesbite. They are full of up to date and accurate information, and I greatly appreciate the effort and time that goes into this site. I don't know where we would be without it.