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.

READ THIS!!

At the end of last year my GP suggested that I should keep a diary,to help track the pku I guess, or maybe it was supposed to be a food diary? I never quiet figured it out and he didn't seem to be able to explain it to me in such a way that made sense, so I ignored it. Itold him that if he or anyone else really wanted to know what I thought or felt and what my journey with pku is currently like, all they need to do it find this blog site. He wasn't interested enough to ask, or maybe he thought I was joking, people always think I'm joking, even when I'm clearly not. I think I need another GP. This one's now decided that he only works from 6pm -9pm and given he always runs hours late, I'm thinking I'll need to take a sleeping bag with me when I go on Tuesday. Oh Yes, he was one of the doctors who believed that adults don't have pku. I read something this morning that someone had put on the pkutree.com.au site from a Canadian site about a new enzyme treatment now undergoing human trials. The article mentioned how children need to be on a lo-pro diet and children this and children that, every once and a while there was a reference to teens but not once did the journalist mentioned adults or what having pku means in the life of an adult. People are more likely to be interested and donate money to anything that helps either small furry animals or poor sick little kiddies! I tried to remind a mother of a pku child once that one day her pku child would be a pku adult so that if us 'oldies' (anyone over 35!) seem to get carried away by certain things it's because we can see the writing on the wall, not just for us but for the 'sick little kiddies' in the future. We fight for things now so that others may have an easier future. Now I'm starting to sound like a political adfomercial! (I bet that word isn't in the spell check!) What stunt do us pku adults have to pull before anyone at all gets it? I NEED CAFFEINE! PS; spellcheck would let me have 'infomercial' but not 'adfomercial' I know what I mean and I like it. There's nothing quite like making up a new word!