Community Discussion Forum Adults and PKU looking for friends with pku Reply To: looking for friends with pku

Avatar of Julie Marie

Hey everyone. My name is Julie Marie,  I have Classical PKU and have had it since I was born. I have a younger sister Emily who also has had it since birth. We are about 6 years apart but feel like twins because of the similarity in our looks, thoughts, and both having PKU. We are 2 of 5 kids. I have some friends but none that have pku. It would be nice to be able to chat with someone who is going through the same thing I am. I am in college and it is a real struggle. I find that staying on a diet is just not possible. Although when I go home for breaks I get right back on track, school makes my life very difficult. I drink the pkuexpress packs although they are gross and am eagerly awaiting something new in the field to come out. I hope I can meet some people on here and have someone to talk to where I dont have explain myself 50 times about what it is! 


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