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.