Avatar of victoria


December 11, 2009 in Uncategorized

heyy my name is victoria.... i have pku and have always struggled with it. i always felt like an outsider and that no one understands what it is and what i go through. many people dont even really believe that i have it because they cannot grab the concept that it is mental and physical and also can take some time before anything would happen. i have not been on my diet for awhile. i can't find the determination to stay on when i always feel like an outcast i live with my boyfriend and his family. everytime we have a dinner everyone has to ask me questions if i cant have something. i just wonder if anyone else has ever felt this way? when i was in elementary school the kids in my class would take my special lunch and eat it and make me eat theres and if i couldnt have it i wouldnt eat. i have always been bullied with this and i guess it has followed me all through life and has made me very insecure. my own boyfriend and friends dont understand it, they have asked me if maybe my parents have made it up and it is just very hard to deal with. if anyone has any advice please send it my way .

3 Reviews of struggles

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Victoria,
    I am really sorry you have had some bad experiences growing up PKU. I have to start with saying that if your friends are not supporting you through this, are they really your friends? I don’t mean to be so blunt, but really… they should be there and supportive rather than kicking you while you are down. In the past, I used to HATE going to a dinner with people and having to explain the PKU diet to them. Then I realized I could just say, “I have allergies, and it is what it is.” There are so many food allergies out there now that when I say I have allergy usually people just say, “Oh ok.” Anyways…. my point is that having a support system around you is really important. Are you drinking formula at all? I would suggest for you to slowly get yourself back on diet, not all at once… make realistic goals for yourself… If you get back on diet and lower your PHE levels, I guarantee you will feel better. I usually find when my levels are lower, I physically and emotionally feel better. Also, when I feel better, I am more likely to talk to people about my PKU. If you would like some tips, please feel free to message me. I saw on your profile you wanted to try Kuvan — have you yet? In the meantime, check out Cook For Love for some great and easy recipes :) cheer up!

  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Katie is definitely right. I have found that true friends are the friends that stick with you through thick and thin. This means that they support you when it comes to the diet, even if they may not fully understand. Whenever my friends ask me about PKU or the diet I never make a big deal out of their questions. They are just curious. I have also learned that if you treat PKU as no big deal and something you just have to live with, then in most cases that is how your friends will feel as well. When you explain PKU keep it simple. If you give someone an elaborate explanation they probably won’t remember what you said anyway. Like Katie said you could even just say you have allergies. Today their are so many people that have food allergies! Good luck if you decide to try Kuvan! Let us know how that works out.

  3. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    Hi Victoria,
    I understand how you feel…I am 24 I have classic PKU when I was younger I felt the same way. Why was I so diffrent how come my sisters could eat whatever they wanted? I had so many questions and I guess anger built up over the years from being the “diffrent one.” I am very lucky to have a great family who supports me and my boyfriend who knows all about my PKU and has been very supportive of me getting back on my diet/formula. But still I needed to talk with people who had PKU because it is only them who can truly understand what I am going through. I was bullied in school for taking my formula to school so I understand how much that hurts and being so young not understanding why you are so diffrent. I was a lot like you off my diet and formula for many years but then talking with my boyfriend about starting a family made me realize that I needed to get healthy not only for myself but for him and my future family. I have only been back on diet for 2 weeks now but hey its a start. You should not be insecure everyone has a cross to bare ours is just a bit harder to deal with at times. I always get the why cant you eat this questions and yes it gets very old I feel like a broken record but as time has gone on I am used to it now. Dont feel like an outcast there are many of us out there who have PKU and we all understand how you feel. I would suggest staying on this web site it has helped me a lot already. Like the girls stated below most people are just curious and want to understand it better and your friends talk to them tell them you are back on diet and ask for their support that is what I did its working great so far! Well I hope this helps you to see you are not the only one who feels like this! Good Luck keep us posted!!

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