My brother has it, and was diagnosed close to 30 years ago (when he was 10). Unfortunately he is not interested in these kinds of forums, just does what his docs tell him. He is not very strict about his diet and smokes.
I did briefly correspond with a lady on the kidney cleanse forum (I think) who was recently diagnose but it was at least 6 months ago. Maybe you could look back through and find her. Best wishes.