Research on PKU and aging

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    • Research on PKU and aging

      Hi All,

      First: I am very glad I found this forum, reading the posts is a big help for me.

      I have been following the diet all my life and still keeping up with it. Sometimes I have periods that I can feel very lonely for no one else in my direct surroundings has PKU. Although my values are sometimes a bit high (app. 600 / 700), I have obtained two MA degrees in Arts, and have my own artistic practice which involves a lot of studying and writing.
      Since my childhood I never really felt physically bad when I had high values, mostly just mad at myself for not keeping it under control.

      For a long time already I have been worried about the effects of a slightly high blood value on the longer term. Therefore I am very curious to research on older people with PKU, if there are any differences between their functioning compared to non PKU people.
      Does anyone know where I can find this information?

      Thanks in advance

      Katinka
    • Hello Katinka,

      :welcome:

      in Germany there is a study just about this topic. The study is not finished yet but there some results that are very interesting.

      The first results are that PKUs don´t have a higher chance to get Parkinson and Alzheimer then somebody else. The second thing is that if you don´t have high phe-levels in your blood over 20 mg/dl for longer time that your body and your brain can heal the damage from alone.

      So you don´t have to worry about it aging with pku if you blood levels are good. But for final results we have to wait.

      greetings
    • This is interesting information though I'm not sure how significant this study can be since there are no healthy 60, 70 or even 80 year old PKUs. Though they can study how the brain reacts on short term now while a subject is young and healthy, they cannot know how the brain will develop after several decades of abuse or when other age-related issues are added. Maybe this self-healing ability wont' work after several decades. I would be cautious nevertheless. In the German part of this forum there had been an interesting discussion about health problems while being without diet. And many reported mood swings, depression, poor concentration or even seizures. Many even told they did not really notice until they re-entered the diet and noticed how much better they could feel. There are definitelly side effects, they might not be Alzheimers, but they are important enough to remain steady with the diet.
    • That's a difficult question and I don't know if there is an answer yet. I am also curious for the results of the study. Would be interesting if they find some differences regarding synapses, plasticity and myelination. Furthermore, I am interested in a comparison of the biological and chronological age.
    • great,

      Thanks a lot for your replies, happy to know that the chance on Alzheimer is not higher. I plan to be on-diet all my life anyway, I do not know how to live without it :)
      The doctors that currently treat me for PKU said similar things, that the most harmful period is your (early) childhood. Nevertheless I am also interested in 'smaller' issues, like lack of concentration or feeling depressed. I think it is interesting to compare brain functions of people with and without PKU, as well as to compare people on and off diet.

      At the same time these results can also be a bit misleading for I think PKU also brings some psychological changes, which are difficult (or impossible) to measure. For example, I notice that, because I have this strict calculator in my head, I tend to 'calculate' also in other situations, like when I go running, plan my days, travel (ofcourse this is also being a child of this time, everyone is calculating everything). But also my artistic work is located around data collecting and 'measuring'. And, (I think) because I had the responsibility of the amount of phe I was taking already from quite an early age, I notice that I know quite well what I want and try to live as conscious as possible, but tend to be really individualistic, which is not necessarily a good thing. I find it hart to trust others and rather do everything at my own than give others responsibility or ask for help. When my levels are low I feel happy (because they are low, or because I learned that they SHOULD be low?), when they are high I feel bad, but have the same doubts. I have to bring a kind of regularity in my life as otherwise I cannot follow the diet, but this regularity and gives me also the focus in my work as freelance artist. In this sense my diet can even be seen as a kind of 'anchor', it limits some of the choices that I can make, but therefore strengthens me in others.

      Does anyone recognize something in this? Has there research been done about these psychological aspects amongst adults?
    • How big is the study Alexander ? Do you know how many people are participating ? It would be interesting to know the variety in age of the participants and the distribution of that (meaning how many of which age).

      Katinka:Here is an article on Fluctuations in phenylalanine concentrations in phenylketonuria: A review of possible relationships with outcomes : mgmjournal.com/article/S1096-7192(13)00311-9/pdf

      That might give you some insight.
      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.

      The post was edited 1 time, last by Paul ().

    • I just wonder what does "high levels for a longer time" mean... I had some messy period in my life when I did not even measure my levels, although I have never gone off the diet. So I am always a bit anxious when it comes to this point.
      Anyway, maybe we just need to wait. Btw, paul, thanks for the link to the article, I found it really interesting.
      Agata. Let me tell you some stories at archipielago.eu and pku.es
    • Hi Alexander,

      Thanks, so it isn't really statistical solid as you need at least 100 persons for that. The problem is that it is very hard to get 100 persons connected with PKU to participate in research, so this kind of volume is a second best.

      @Agata : you are welcome.
      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.
    • Paul wrote:

      Thanks, so it isn't really statistical solid as you need at least 100 persons for that.
      you are right, but to find 100 PKUs who are over 30 years old (minimum for that study) its really difficult. and the most in that age don´t want to do that, because they drop off or don´t want to talk about the pku.

      it is in german - but these are the details: pkuboard.info/index.php/Attach…nstudie-Tübingen-all-pdf/

      agatabak wrote:

      high levels for a longer time
      it means that your blood level ist over 20 mg/dl
    • @Alexander wrote:

      you are right, but to find 100 PKUs who are over 30 years old (minimum for that study) its really difficult.
      True but if you'd take this study global you will hit the 100 mark. Difficulty is the funding and credits for the research being done.
      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.
    • You triggered an idea @Ria181 if we recruit PKU's here I think we easily hit the 100 mark as we have more than 3500 members at the moment. A good example of patient driven research.
      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.