Avatar of Lena



December 21, 2016 in Living with PKU

Hello! I am new to this, the blog, the posting and the website. I'm 25 years old and I have been living with PKU all my life. I remember being picked on in school because I had to take my formula to lunch. My step mother saying she understand and now only realizing later that there is no way she could. The loneliness I felt because in this problem I was alone. I remember thinking that they say everyone is the same on the inside but I just used to say I'm different on the inside too. The millions of time trying to explain your condition to others and the dreaded question I can never seem to answer on the spot, "what food can you eat?" My sisters didn't get PKU as I did and I have never met anyone with PKU let alone talk to anyone. I would love to though, truly. So, come chat with me, if you feeli like it. Bye!

2 Reviews of Hello!

  1. Registered: Dec 13, 2016

    Posts: 0

    Hockley, Texas

    Hello Lena, My name is Keira. I would say that you just described my early childhood. It is truly hard to explain to everyone all the time, “what foods I can eat”. I, too hate that question. I also understand the felling of being different everyday in your own skin. It was very hard for me as a child to make friends. I felt alone and I felt like everyone could see the pku inside me, like it was a visible deformity. I felt everyone staring at me when I ate. For the longest time, years, I didn’t tell people about my pku unless they were really close friends and even then it was the generic version of “i’m a vegetarian”. I also found it hard to explain because I didn’t know all the details of my own disease. Now, I have fully educated myself and I know what to say, and how to say in generic terms to satisfy anyone. More importantly I decided that my disease was not the death of me, and it wasn’t as horrible as I made it in my mind. I found that the more I researched and the more information I obtained the easier it was to accept and explain, to myself as well as to other people. I didn’t feel as alone, because I discovered I wasn’t. I am on several pku websites as well as several dietary online shops; I also found a way for the insurance to pay for my formula. So I tried every kind I could get my hands on until I found one I liked. That was a huge hurdle, once I found one… I realized I can stay on diet; one day at a time. My biggest struggle is with breads, rices, and pastas. I LOVE CARBS! There are several websites that I found with great substitutes for my favorite carbs.
    I also have a sister who did not get pku, I was the lucky one. It caused a lot of friction growing up. I was jealous of her because she could eat what ever she wanted. Much later I found out she was jealous of me because of all the attention my mother gave me trying to keep my diet healthy and diverse. We fought all the time, it only got worse the older we were. Until we finally sat down together and hashed it all out. I was tough but it bore wonderful fruit. Now we talk often, she asks my advice on parenting, I ask her about fashion, we keep in touch. I love it. She also lives about 1600 miles away, so I don’t get to see her as often as I would like. But we make it work. So, I hope this is enough information to start off for you. If you want to talk or have a question feel free to write or if you would like to talk in person you can call me anytime… 281-727-6646. I live in Texas. I would love to hear from you.

    • Registered: Oct 17, 2015

      Posts: 0

      Monticello, Arkansas

      It was great to hear your story too, the similarities to my own feeling and actions I had when I was younger make me feel better on the inside. It’s always nice to know we are not alone out there. I always knew there were others with PKU. Thank you so much for your kindness!

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