PKU.com Community Discussion Forum New to PKU.com just like me Reply To: just like me

#7872
Avatar of Lucy
lucyday1
Member

Hello to everyone of you. My name is Lucy and I am 50 years old and was born with PKU. I was off diet my whole life except when pregnant. I was not on the diet when I got pregnant. I know what strawberry feels as I have always felt different. I was on the diet a few years ago after being on the diet my whole life. I did see a difference, but because of finances I was not able to continue the diet. I was on this site a while back and have returned to see what new developments have been made. PKU for me was not a good thing in my experience. I always blamed PKU for my failings when I was younger, but now I just want to learn more about it I know something, but things are alot different than when I was on the diet when I was a child. It seems everyone here on this site are much younger than myself and so can’t feel that I have much in common other than PKU. I have a grown daughter who is PKU free only a carrier. She has two children who are PKU free. I stayed on my diet during pregnancy and followed it very strickly. She was born with a heart problem, but was corrected at age 4 she if fine now. Sorry if I got off the subject. We who have PKU are different, but that is what makes us special I think. I don’t think anyone who does not understand PKU will every fully understand. I think we should learn as much as we can and then explain it to our friends and if they are your friends they won’t ask you to got off your diet if they know it will hurt you. Well that is my two cents worth. Thanks for listening. Lucy CPKU

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional