My PKU story is anything but typical. I was diagnosed at 8 yrs old in 1968 because my brother who was 3 yrs old also PKU was not hitting milestones. My mom tells them, ” She’s having trouble in school, test her too.” So I was 8 late diagnosed untreated with NO brain damage!! I wasn’t put on diet but they “studied” me for 2 years. They told me many things about PKU that later turned out to be untrue. I spent most of my life off diet . After several years of emotional issues and depression and losing every job I worked I found a clinic and begged to go on diet. My level was a whopping 2500. Dealing with PKU diet was difficult but I had to do it because I saw it as my only option for a good life. This was me on PKU diet for the first time ever in 2004, I was 44.
Living with PKU and staying on diet has been most impacted by finances and a lack of support.
I HATED having PKU at first. I felt so different and isolated from everyone socially. Sometimes I still hate it but I always try to remember that I’m not abnormal I’m unique! PKU is a part of who i I am but it doesn’t define me.
I’m amazed more and more everyday that I am what I call “PKU miracle.” Just that one thought helps me to continue moving forward,staying on diet doing all I need to do to live well with PKU, because my brother wasn’t so fortunate; He suffered moderate brain damage due to his late diagnosed PKU. I’m SO blessed!!