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NPKUA International Conference 2016

August 18, 2016,  0 Comments

I was curious if anyone out there that attended the conference a couple of weeks ago in Indianapolis, Indiana could report on it. I would have liked to have gone to it, but was unable to go. Do they have a conference every year or once every two ye...Continue Reading

Parents of PKU Children

August 15, 2016,  0 Comments

Parents, I cannot emphasize enough what a huge role you have in the success of your youngster in PKU diet management as an adult. I am very grateful for the advocacy, guidance, monitoring, and support that both of my parents gave me in dealing with ...Continue Reading

Welcome to My Blog!

August 15, 2016,  0 Comments

In my first post, I would like to say that I feel that I am truly challenged every day by the diet to be the best that I can be every day. Not only do I have to eat right and exercise, but also I have to do my best to drink my 3 glasses of formula a...Continue Reading

My pku

May 5, 2016,  0 Comments

Hi my name is shona I am 56 this month I was born in 1960 in belfast I was 2years old when I was discovered with pku and I was put on gluten free low protein diet the substance I was put on was minophen I was the first person to be born in belfast w...Continue Reading

2 years later.

January 6, 2016,  1 Comments

Its been 2 years! yes this is Pkugirl88 but on a new one because well I forgot my stuff. Lots have happen since then. I work at a daycare just hit my 1 year mark. For a while I was on my diet almost perfect. Then when I moved into my own place man th...Continue Reading

PKU with Alopecia Areata

November 22, 2015,  0 Comments

Hi everyone with PKU. I have been diagnosed with having Alopecia Areata and got adult Classical PKU. I was wondering does anyone know what could be causing this and whether anyone with PKU got it? I have lost eyelashes(2 lids), scalp hair, beard hair...Continue Reading

Alone with Pku

August 22, 2015,  1 Comments

I live in a town were, if I say, I have pku. I get looked at like I have 4 heads. Huh What's pku is what I always hear. I tell them basic info on it. But it can be frusterating repeating myself so often. I feel like telling them to google it. But I w...Continue Reading

Branching Out!

February 13, 2015,  2 Comments

Hey everyone, im Mary Caite I have Classic PKU and have been on PEGPAL for 4 years now. Im about to graduate with my Associates of Applied Science in Dietetic Technology and am going on for my bachelors in nutrition to become a Dietitian for PKU ...Continue Reading

My Current PKU Status

January 22, 2015,  3 Comments

I just turned 53 years old. I have been off-diet since the age of 5. I wasn't diagnosed until I was 4 years old and my youngest brother was screened and diagnosed with it. When they back-pedaled and tested me...well the rest was history. When I was ...Continue Reading

Ya Gotta Have Faith

January 18, 2015,  0 Comments

Ya Gotta Have Faith No, I don’t mean the George Michaels song, but if humming that gets you through then solider on…. The tail end of 2014 and the beginning the 2015 have really begun to show me what my persistence, dedication, and faith has don...Continue Reading

It’s all an Act …..

January 5, 2015,  0 Comments

"You don't climb mountains without a team, you don't climb mountains without being fit, you don't climb mountains without being prepared and you don't climb mountains without balancing the risks and rewards. And you never climb a mountain on accident...Continue Reading

Phe Challenge

December 3, 2014,  9 Comments

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 exper...Continue Reading
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    About this Blog

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    I am an Adult PKU Educational Professional living in Minnesota who feels like he needs to take his PKU diet to the next level by sharing, discussing, and learning from others on read more


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