Community Discussion Forum Adults and PKU I dont get it Reply To: I dont get it

Avatar of Osgood

THank you for your repsonse- and more importantly congrats on your healthy baby girl!
I guess for me the question remains the same. There are stories of blood levels being at 15+ and people having seizures and other severe complications and the fact for me remains the same. I have no negative side effects to speak of and my lowest level over a decade span was a 12. SO…its hard to say that with all the resoucres that are there for children why there arent the same for adults. We have just as many issues ( if not more) then a child. nPart of that I know is that there are not many functioning adults with PKU. We are some of the older adults who have adhered to a life long diet and while I am grateful for that, I wish science and support would catch up to my generations needs.

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