I find it funny. There are so many different diseases/conditions that get so much attention in the medical world. Aids, Cancer, Diabetes, Tuberculosis, Swine flu. etc. But there is never any mention of PKU. I guess it's just because we're so few compared to others. There is no known cure. I've asked my specialist before about studies. I was told they had been experimenting with a medication that acts as a Phe blocker. But its even more inconvenient than the medication some of us already take. Many times I have told people numerous times that I have a condition called PKU. Hardly anyone knows what it is, even some in the medical profession. So throughout my life I've learned to avoid having to teach people basic bio chemistry. Instead of telling them the whole process of it all, I usually just make up excuses like, "Oh it's just a protein shake." or "I can't eat red meat because it upsets my stomach." But after years of saying this to friends and co-workers, I have realized that I'm lying to both them and myself in a way. As a child I was scrutinized by my peers because of this condition. Singled out, and in a few cases humiliated because of it. Which is why I have turned to changing my life story. I was told by my dietician that, she would recommend I eat every 4 to 5 hours. Because if I go too long without eating my body will begin to fast, which in turn will cause it to breakdown stored nutrients, which will in the long run supply me with proteins which will contain Phe. Therefore it is unhealthy if the majority of my days contain "fasting". Which quite a few of them do. I work full time as I am making my way through college. My days usually do not permit me to eat at regular times or take my medication at regular intervals. I wonder if anyone else has this problem? All I'm saying is that the whole "eating at the right time" and "taking your medication at the right time", this all really sounds to me like a condition that isn't entirely resolved. It almost seems as if medical professionals have deterred from it because theres a way to sustain it. But what's the point of putting a bandage on something if it's never going to heal? And there are a few patients who decide just to take the bandage off all together. I hope one day this condition is recognized by the general public. People may call me ignorant, and self centered just because I have this condition and am hoping this. But think about other conditions/diseases. At one time they were misunderstood and ignored. But now all of a sudden they're a "big deal". Everyone started flippin their shit about autism about a year back because they found out its more occurrent. I've even heard of studies that apparently by 2020 1 in 4 children born will have autism of some sort, from mild to severe. It just really seems like nobody really cares until it's "their" problem. And I'm just saying you never know. There could be alot more carriers than people think out there.