A few years ago I had not heard of APFED. I knew my youngest child had this disease called eosinophilic esophagitis (Eoe) but I only knew what his GI doctor told us about it. Through a wonderful chain of events my son was referred to a new immunologist and dietician team who met with my son and were telling me all types of treatment options that seemed radical. They also referred me that first day to APFED.org where I could read more about the disease. I was shocked to discover the we had spent years only treating symptoms (which often landed my then 8 year old
In the hospitals) and not the actual cause of the disease. Through apfed I was able to clearly see what I could do for my son at home, at school and begin to avoid all of the hospital stays. Through their scholarship programs for first timers I was able to travel to Philadelphia within months of learning of the organization, to attend their yearly conference. I had never met any other children like my son or spoken to any other parents whose children had Eoe. It was both eye opening and heart breaking to me as a parent as the panel of teens and adults with Eoe spoke about their symptoms and used very similar words as my son who often would scream in pain. Up to the weekend I had allowed a doctor who was not knowledgeable dismiss my sons symptoms and pain levels. I thought by ignoring his "drama" was helping him to get through and stop complaining. When I heard those teens and adults describing feelings of being stabbed in the heart during a flare I cried. That weekend changed our lives. I knew what needed to be done and had some ideas how to start. In the years since I have been able to travel to Denver for another yearly conference as well as attending a smaller, local break out sessions sometimes offered. We are a few years out from this eye opening introduction to apfed and I owe them so much. A representative once did a conference call with the school district to help ensure my son got the IEP he needed and was entitled to, they send out education packets to my sons doctors so they know what he has and how to treat, they give us the very latest treatment options. Most important was learning we were not alone and my son meeting kids like him! My child is feeding tube dependent and we had never met one other child like that. Now my son has a ton of other buddies like him! I can never thank APFED enough for what they did to help me
Learn to be the best advocate o could to ensure my son received the treatment he needed and deserved!
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!!!
My family just went to our first APFED conference in San Diego and I am pleased to say it exceeded all our expectations. We learned so much and everyone was very nice and helpful. Our teen son met others like him for the first time in his life and made important friendships that continue online. We all felt supported in our individual journies of learning how best to cope with our child's disease. And the most valuable take away - we collectively left with a renewed sense of hope.
I highly recommend APFED to anyone struggling wtan eosinophilic disorder. They are a true blessing.
APFED has helped me deal with my EoE in multiple ways, both as a resource for information on the disease and also as a community. I attended the patient conference this year and it was an amazing experience that gave me a network for support, which is something I haven't had in the 2+ years since my diagnosis. This is by far the most informative website and the support team behind it is incredibly responsive. The EOS connections support page also helps to get questions answered and serves as a reminder that I am not alone in this fight. Thank you APFED!
I think that APFED offers a lot to the community. As a patient with EoE I have developed great relationships with other patients with my disorder. I look forward to their conference every year and I have attended the past 10 conferences. It is a great experience and I learn a lot.
APFED is an amazing resource! I don't know how we would manage my son's care without the information base, resources, and community APFED provides. My son looks forward to the annual conference all year--he makes "EoE friends" and I learn about advancements in research that inform our treatment plan. I have raised $35k for APFED because they drive innovative research. We hope for a cure!
Over 10 years ago my son was diagnosed with EoE. Over the years APFED has been a great support and comfort for our family. The staff and volunteers at APFED go beyond their job to ensure that families have the knowledge needed to make informed decisions about Eosinophilic Disorders.
APFED has been a blessing to our family, as we deal with EoE with our three children. The conferences are a great resource to meet with other families and doctors and understand the disease and treatments from a variety of sources. Lately, APFED was critical in providing and sharing information related to Legislative activities in other states to allow us to successfully pass similar legislations in Nebraska. Without this critical resource, we wouldn't have been able to advance critical assistance to assist in the care of children. APFED is very responsive with information requests through e-mail and other social media venues, maximizing communications.
I am a volunteer who raises money for apfed. but MOST important I am a mother of a child with EGID. these apfed support groups help everyday by giving muh needed support and guidance through this rare condition
APFED is a wonderful and highly recognized nonprofit organization that has benefited my family for years. When my three children were newly diagnosed with Eosinophilic diseases we couldn't pronounce the name much less understand what the condition meant. I found an APFED flyer at our pediatric gastroenterologist's office that led me to their website. Once I got online and took a look around, I was encouraged to get involved with APFED. My main reason was because I felt like APFED knew how important awareness of Eosinophilic Gastroentestinal Disorders is to me and my family. Research for a cure is huge as well, but if people aren't aware of Eosinophilic diseases then they are less likely to donate to help find a cure. Another thing that I love about APFED is their desire to educate both families and medical professionals.
My son was suffering terribly with a mysterious malady that no doctor seemed to be able to nail down. We were misdiagnosed 7 times by as many different specialists. Every time we saw a new doctor, my son would get a different title, and a different therapy. Nothing ever worked. I was desperate to help him feel better, and spent a good bit of time online, researching as much as I could from the little I knew. I eventually found the APFED website, and a detailed description of what my son's major symptoms were. Over time, I would continually come back to the APFED site to confirm my suspicions. I even made contact with someone in the disease community, who helped me tremendously by phone and email. They turned out to be a representative of APFED! My son has since been diagnosed with the condition I suspected, and APFED has continued to be a huge resource for us as we navigate the course of his disease and treatment.