Phe Challenge

Phe Challenge

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Phe Challenge

December 3, 2014 in Living with PKU

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Have you ever wished those around you knew how difficult it is to stick to a low-Phe diet? Even for those who are closest to PKU – family, friends, caregivers, clinicians – it can be challenge to understand what it’s like without having experienced it for themselves.
That’s why this year, in honor of PKU Awareness Day on December 3rd, we are challenging those who treat, know and/or care about someone with PKU to join together in the first ever Phe Challenge! Take part in this special initiative to help spread awareness about PKU and the challenges that people with PKU face each and every day. Together we can make a difference and spread the word about PKU! Here's how it works:

Follow a low-Phe diet for 2 days.
Know someone with PKU that you would like to support? Follow their low-Phe diet for 48 hours, eating the same amount of Phe or protein that they are allowed to eat each day. Visit PKU.com for low-Phe recipes and diet tools.

Take a short 5-question survey to share your experience
Click here to access the survey - a donation to the NPKUA will be made in your name!

Don't forget to spread the word!
You can help increase awareness about PKU. Share your story on the PKU.com Facebook page or your own social media. Encourage your clinic team, family and friends to participate and help spread awareness about PKU!

YOU can make a difference!

13 Reviews of Phe Challenge

  1. Registered: May 26, 2017

    Posts: 0

    No Location

    Pku is not a fun diet well adults my age are eating pizza and hot wings we are eating saladsand specailty foods and the formula taste like someone puked in your mouth after being off the diet for sometime i have some hope in being half normal a medicine called kuvan i hope it works for me

    • Registered: Feb 21, 2016

      Posts: 0

      Morris, Minnesota

      Lol:)

    • Registered: May 12, 2017

      Posts: 0

      Mansfield, Ohio

      Mya said on May 12, 2017

      I agree with you on the formula no one understands on how bad that stuff taste and why I don’t want to take it I only do because I have to.

  2. Registered: May 26, 2017

    Posts: 0

    No Location

    Another thing being off the diet i find i dis like the taste of milk i only use it on ceral

    • Registered: Jul 11, 2016

      Posts: 0

      Ripley, Tennessee

      I am 54 and was taken off diet at 8 years I recently went back on diet. I never liked milk but I do like my phenylade essential. ;-)

  3. Registered: Mar 15, 2015

    Posts: 0

    eugene, Oregon

    I am 59 years old I have had PKU all my life, I am kind getting concerned about making my memorie problems and intellectual problems worse becuase I have not been on the diet accept for a month of my life. I did not do well on the diet. The doctor said my phe level was dropping into the danger zone so they took me off of it, I have not fallowed the new developements so I* don,t no what new thiiings are out there

  4. Registered: May 26, 2017

    Posts: 0

    No Location

    I have pku no one understands no one gets it

    • Registered: Dec 13, 2016

      Posts: 0

      Hockley, Texas

      Roberta, i have classic pku. I get it, I understand the challenges we face everyday. You are not alone.

  5. Registered: May 26, 2017

    Posts: 0

    No Location

    I’m pku all my life the diet is find hardest only doesn’t taste anything goes like the real stuff and people around eating normal food I’m eat special food wishing I could be eating what everyone else. I’m also dietbeic which sucks and the two are really a challenge to manage . One counter acts the other.

    • Registered: May 26, 2017

      Posts: 0

      No Location

      Hi roberta…I was put on diet when I was 2 yrs old it was really hard at the beginning I was always explaining to everyone like teachers and friends etc about my pku and got abit annoying and even now when I try to explain to people I dont think they get it…I dont go into a big story I just give people a shortened version but you feel as if your always repeating yourself all the time but I thank my mum she was persistant in trying to find out what was wrong with me and taking me to
      The hospital every month ….its not a very nice tjing to have but its abiut how we deal with our pku…even when I was younger I found it hard to stick to but I say my life isnt too bad ive worked since leaving school had variouse jibs with my local council in dfferent departments ….hope this storybhelps a wee bit…any time you want to chat feel free

  6. Registered: May 26, 2017

    Posts: 0

    No Location

    Hi nancy was reading your story…can I ask why you were only on diet for a month out of all your life…im not mu h younger than you I was 2 years old when I was first discovered with pku then put on diet till I was13 then was allowed off was off and on diet till 36 then had to go back on diet when I was expecting my twins when they were born I was allowed off diet but I think I should have been kept on now at 55 ive whent back on diet myself I take the pku coolers there actualy ok to take I want to slowly get back onto the low protein gluton free foods … I dont know what I want because im trying to lose weight and for that you need to have a lot of protein but cant obviousely have protein with not being allowed to eat proteins its a viciouse circle but will just have to see how it goes ive also to start taking my bloods I think if you try one thing at a time say going on the substitutes first …its about getting the right one that you like but I think the coolers would work for you theyre actually quite pleasant to take and theyre over in seconds I take 3pku coolers a day Im on the citrus ones I was on pku 20coolers they were ok I tried tge purple ones …then even gradually trying the low protein foods ..theres also another website called yes we cook that for pku and they tell you if theres exchanges in them and how many….well I hope I was of some help to you …if you ant to chat feel free

  7. Registered: May 26, 2017

    Posts: 0

    No Location

    I feel your pain Melanie, I too hate that I can’t eat some foods others are enjoying. I have been taking Kuvan for I think 3 yrs. or more and it has been great for me. My levels were up and down like a yoyo. Taking the Kuvan has regulated my levels. I still watch what I eat, and so thankful for Kuvan for helping me. I sure hope that it works for you as well, take care, God Bless!

  8. Registered: May 26, 2017

    Posts: 0

    No Location

    hello my name is cheryle. I was bornin 1962 I am 54 years old. I was only diagnosed with classical pku. I was 5 years old . and then I had to go on a pku diet. through till 13 then I was allowed to go off it causes doctors believed it was safe to do so. I was off diet for 35 years. and I started to get problems being vague nervous mood swings and other problems. and now I find it very challenging to stay on the diet. especially when I go out to lunch.and find it difficult cause arrange of food what I can eat is not lot to choose from and seeing every one else eat what they like is very challenging and feel left out because of foods I am not allowed to eat

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