The PKU Exit

    This site uses cookies. By continuing to browse this site, you are agreeing to our Cookie Policy.

    We are happy to see you visit us as a guest.
    Some functions require a free registration. Become a member!

    • The PKU Exit

      Hello,

      i just was shocked as I heard on the E.S. PKU Conference in Antwerp how many people in Germany break off the PKU diet. It is about 95% from male and about 60-65% from the female teenager. So all together it is about 80%.

      I can´understand why they do that. Because nobody knows how it will be in the future with that people when they get older. At the moment it is difficult to say how is it when you are on diet, but off diet?

      Do you know people who did that?
    • I dont know anyone who has stopped with the diet, it would be interesting to know how much PKUs in the Netherlands drop out. I don't think its wise either and we do have access to good care whereas in the us I know from figures 71 percent isn't actively treated and they want access to treatment. Is here anyone on the board who has stopped with the diet and like to share his/her experiences ?
      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager
      paul.van.berkel@espku.org
      espku.org

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • There is a german member Ska that drop out and start now again.

      He wrote that he understand that people drop out because it is difficult to buy the low protein food and to organize everything. Also he had problem to get back to the diet because now he is used to eat normal food. But after starting the diet his friends recognized that he become more attentive,concentrated,calmer.

      But we interesting to read from others too.
    • There was a time when I didn`t follow my diet as I should and I had very high levels for a long time. I can`t imagine being off diet. I memory of how I felt with very high levels keeps me from doing that. Generelly it is like a domino effect it starts with lack of concentration, maybe headaches for some, your body works badly in general and if you are a good observer you can notice it. I have found a good balance with my diet and having PKU diet in PL is so much easier than it was years back. I don`t know if there are any old old very old posts of us - as there were persons who were out of diet for different reasons and they wrote how they felt.
      Many PKU recipes and information on various benefits for PKUers and families with kids with PKU.
      Language: Polish
      Visit: pkufamily.com