Community Discussion Forum Parent support Positive PUKer’s Reply To: Positive PUKer’s

Avatar of Breanna

Hi again,
I’m glad that you feel a little bit better! If your daughter follows her diet she can live a completely normal life. Next fall I will be going to college for Nursing/Pre-med (I want to make my way to medical school). I’m sure when I was born my parents did not think that would be in my future!! They learned fast that my PKU was not going to stop me from doing everything that my siblings did.
Tracie- nHave you started Kuvan yet and do you know if your a responder yet? I hope so! When I began Kuvan over a year ago we were very worried that I would not respond because I have Classical PKU. My mom was so worried that I would get bummed out if it did not work that she was very hesitant to let me start. At the time she was told that whether I would responded or not was based on my PKU mutation, but they’re learning today that anyone with PKU could potentially respond to Kuvan regardless of the type of PKU they have. That’s exciting! Anyway good luck! Keep us updated.

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