Well, I am opening up a bit about PKU. I was at an event in Clearwater Beach, FL on Saturday 8/7/10 and met people with PKU for the first time in my life. We sat at a table with a boy who is my daughter's age and has PKU as well as a man my age with PKU. I spoke with all but one of the speakers and they treated me as an adult, as a normal person, not as a freak. That is what keeps me from opening up most of the time. Felt like a FREAK... When I was a young boy I hid PKU from people. I was "allergic to milk" as far as most people knew. When I used that line in college the typical response was, "so you're lactose intolerant?" That became annoying, but not because the people were insensitive, but because it was not what the problem was. When I was just about 4, I told a waitress that I was on "a special diet" and could not have anything with meat. My dad's wife (my stepmother at the time) was apparently embarrassed and said (angrily), "You are NOT on a special diet! Don't say that!" I felt like a fool. I was a bit hurt by that, and it shaped me in a way that was part of the foundation to my feeling isolated and freakish about PKU. Looking back, I understand that she did not really mean to hurt me. I harbor no ill-will. PKU is way out of the ordinary. Over time I became a person who would not share the freakishness of PKU with others. I hid the fact that I was on "formula" (a word I despise even now) and minimized the inability to have meat or milk products. So deep was this freakish feeling, that I was convinced that I would not live past 20. No one ever told me that, I just developed that idea over my growing years. Fortunately, by the time I was 11 or 12 I was on a "normal" diet except for dairy products. By the time I was 13 or 14 I was not very concerned about dying before I was 20. Since I am now more than twice 20 (though I began to count backwards at 39, so I am actually 36 by my count), I do not worry about reaching my 20th birthday anymore. PKU Event Helped... Going to the PKU event, "What's Really New with PKU," I remembered a lot of my experiences. It also revived my idea to write a book about PKU- called Living With the Enemy. We will see what happens with that once I am under treatment for PKU again- starting tomorrow! I have too many ADD-like symptoms to complete a book at this point. The best I can do is about a 10 page essay (and that is a major task). Please let me know if you read this and can relate; cannot relate; still think I am a major freak or just think my writing abilities preclude me from publishing a book. Thanks!