Community Discussion Forum Adults and PKU where has this been all my life?

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #9254

    As a child I knew two people, other than myself, who had PKU and they lived 5000 miles away.  My clinic didn't organize many events.  Either that or I was just aweful at hearing about them.  Anyway,  they never were at the most crucial times in my life and struggle with PKU: adolescence, the teen years and first bit of time at college.  I'm not here to complain about that.  I'm writing this to say I wish this existed when I was going through those times.  I have just discovered it.  I haven't been able to stop smiling since.  I don't know about you but there were times in my life when all other aspects of my life just piled on it just seemed like I was the only person in the world with PKU.  I had no one to talk to.  I assumed and sometimes still do assume that I was the only teen/young adult to struggle with the diet.  Did you all ever feel that way?  Anyway, I feel now that I can get to talk to people who may have gone through the same struggles I went through, who have solutions because they've been there.    I think one of the greatest potential resources can bring us is eachother.

    Avatar of Nicole


    Welcome to x This place is great for help and advice or jst a to make friends who are experiencing what ur going through.

    Well am Nicole and am 28 and i have Classical PKU and i live in Scotland in the UK.  I also wish i heard about this website when i had my struggles specially through my first pregnancy when i needed someone to explain to me why this was so hard and what to expect etc etc someone whos been through it all basically and now ave found it am gutted i never had it before but glad am here now and i now share my struggles to keep to the diet to keep healthy and glad am not the only one experiencing the scary symptoms i ave when exposed to high levels of phe x

    You need any advice or help or have any question, ask away x

    Nicole x

    Avatar of Jennifer


    I am happy you have found this group!  It is a fantastic place to meet others with PKU.  I am not sure this would have made a big difference to me when I was struggling with PKU b/c I am notoriously hard headed and can't learn from others!  LOL!  But I know it helps me now!  When I was growing up I lived in South Dakota and we had to travel all the way across the state and then through Minnesota to Minneapolis for clinic, I know how it feels to feel like you are the only one with PKU.  I didn't meet another person with PKU outside of PKU organized events until I was in the Navy, in Japan, on a ship, and low and behold there was another guy with PKU on my ship…who would have ever thought in such a small environment I would meet someone with PKU there?!  

    How did you start a Forum?  I tried to figure it out and couldn't, so I just started a blog!  

    I hope to talk to you soon!

    Jenni xxx

    Avatar of PKU

    Hi Jenni,

    To start a new topic, click on the Categories tab, select the Forum where you want to start the new topic, and then click on Start New Topic.

    If you need additional information, please contact us at“>

    Best, Support Team

    Avatar of tammy

    hello pku fam!!! i am so glad i found u all  i am soooo struggling with my pku.  i know i need to b on it but with limited means its hard the food is so expensive, i drink my supplment but thats about the best i can do until i figure out hw i can get the low pro food i love going to the pku picnics, i wish i knew when they were. reading ur guys' stories i dont feel alone soo much please stay with me in my stuggle. i wanna go to a differant clinc because i dont like the one i go to because my ex-husband goes there and i feel like the dr.s are judging me. is that wrong of me? if u hv any ideas of hw i can transfer to mercy childrens hospital in ohio let me know. whelp better go take care of my 3 lil kids. night pku family.

    Avatar of tammy

    this sucks im trying to get set up with st.vincents specialty clinic in toledo to go there formy pku but whenever i call they never have a clue as to what im am talking about im getting frustrated, i want the help and dont wanna hv to go to indianapolis for my clinics   is there anyone out there that can help me with my dilema

    Avatar of

    Hey! I'm from Alabama as well. I am working on starting a support group for our state… no, there haven't been many events in Alabama that I know of either. I believe that is because we have never had a support group.  Hopefully, we'll be up and running soon. :D


Viewing 7 posts - 1 through 7 (of 7 total)
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