The Patients are Revolting, so is the system!

I'm sick and tired of adults with pku constantly getting the rough end of the pineapple, the sharp end of the stick and generally being overlooked in regards to our needs as individuals with pku. Even parents of pku children don't always seem to get it. Newsflash - one day, all things being fair, your pku child will grow up and be a pku adult. I'd like to see a pku fundraiser, involving food in which anyone with pku attending could actually eat something there without having to provide their own. Or how about a pku group advertising their first meeting of the year as a 'brunch' to actually provide a low protein equivalent. We're talking a fruit salad and a tin of imitation cream here, nothing flash. Something that simple would help ease any feeling of exclusion that we all feel in many social situations. I am starting to believe that there is no organization that properly represents the needs of adults with pku. A national advocacy body aimed at education and highlighting the particular needs of adults with pku would be great. It wouldn't be to the exclusive benefit of adults, as there is obvious overlap in relation to access to special diet foods and government assistance. One day when I'm feeling a bit more sane I might look into that.