Community Discussion Forum Adults and PKU PKU Adults Reply To: PKU Adults

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The first known pku people are not just becoming adults. I am 49 years old and have had pku my whole life. When my parents had my brother and sisters and me. Pku was unknown. My older sister was born in 1948 and my brother after her was born with pku and my parents didn’t know what was wrong with him. At the time of his birth no one knew what pku was. I have been off the diet my whole life and was on it when I became pregnant. I do agree there is no support for adults with pku. The sad thing is children with pku will run into the same problem we have as adults with pku if some one does not do something soon. I tried to go on the diet a few years ago and I went off, because it was too expensive and as an adult with pku there was no fanincial support to help get formula. I have no mental, emotional, or physical problems being off the diet, but it may not be the same for everyone. Just thought I would give you a bit of history of pku.
Lucy Day

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