Hi There, Fellow PKU carrier here. I'm 38 male living in California. My younger brother and I have PKU but my older does not. Came here to say that if you follow diet through adolescence after your brain is developed you don't have to worry about losing IQ or retardation nearly as much as when you are young and developing. Just stay on the diet and you're fine. Sounds like you're doing great. When I was younger and in elementary School in the late 80s being vegan was not really a thing so it was tougher with the kids at school sometimes. But anyways, keep it up! Also, not sure if you know this but gene replacement therapy is here for pku and they are entering human trials with many drug companies competing to the finish line. My Dr. says not yet but around 5 years from now PKU will be cured with a simple one time injection that replaces the gene. Future generations will not have PKU as long as this therapy is made available. Pretty cool right?!
duduorion7 karma
Hi There, Fellow PKU carrier here. I'm 38 male living in California. My younger brother and I have PKU but my older does not. Came here to say that if you follow diet through adolescence after your brain is developed you don't have to worry about losing IQ or retardation nearly as much as when you are young and developing. Just stay on the diet and you're fine. Sounds like you're doing great. When I was younger and in elementary School in the late 80s being vegan was not really a thing so it was tougher with the kids at school sometimes. But anyways, keep it up! Also, not sure if you know this but gene replacement therapy is here for pku and they are entering human trials with many drug companies competing to the finish line. My Dr. says not yet but around 5 years from now PKU will be cured with a simple one time injection that replaces the gene. Future generations will not have PKU as long as this therapy is made available. Pretty cool right?!
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