Organized by: Donna Pope
I have PKU and this is my story: PKU is found in Newborns. A rare genetic metabolic disease in which a person's body lacks the enzyme, phenylalanine to breakdown protein. Uncontrolled blood levels results in psychological and emotional, and social issues. For people who were treated in the earlier years and taken off diet after the developmental stage of the brain as I was, years later found "Diet for Life" was the way to go. I was off diet for 23 yrs. not knowing about this new information. Emotional and psychological issues started to become more apparent from the damage done from years of toxic phe levels in my blood. I am in constant struggle maintaining safe blood levels while trying as best as possible to eat a healthy diet. PKUers eat a High Carb diet, over time, it can take its toll on the body possibly affecting glucose levels over the long term. special protein supplements gives vitamins and minerals missed in our unique diet. I am hoping when the day comes and enzyme therapy is approved and regulated by the FDA, I am one of the lucky ones. As a PKU adult, my wish is to be able to eat a normal diet someday without having to think about consequence.