A message to ALL people with PKU

A message to ALL people with PKU

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A message to ALL people with PKU

July 23, 2009 in Uncategorized

After reading several blogs over the past month, I have seen both success and stuggles with the PKU diet... Currently, I am doing well with my diet, however I think it is important for people to know it was not always easy for me with PKU... I have had my own struggles with my PKU diet growing up.. It saddens me to hear people blog about how they feel like a failure because their diets are not well-maintained.. Growing up, I always followed a low-protein diet, however I missed the component of intaking my formula. Never did I realize, this could have a devestating effect on my body. By highschool, I was completely protein deficient and did not even realize! It was my senior year that I went to my nutritionist, and she explained to me that my body was basically deteriorating due to the lack of protein in my body. This kind of scared me. I tried several formulas, but I could not hold any of it down. Then, I tried the Phlexy-10 bars and pills. The pills worked for me. I had to intake 120 pills a day. I was a bit nervous going away to college explaining this to my "new friends," however I did it. This formula intake worked for me for about 2 years. I saw a difference in my academics. I was retaining information, concentrating easier, and had much more energy in a given day. Slowly, I began to decrease the amount of pills each day and eventually stopped taking them! The typical symptoms of PKU (sleepy, moody, lack of concentration) all started creeping up again... I was really irritated with myself... I started to hear about Kuvan and thought I would give it a try... In the meantime, I heard about Camino-Pro drinks which are formula.. The company sent me samples.. At first, again I could not keep it down in my stomach, however I kept trying it.. Eventually, it worked! I have been taking the Camino pro drinks for almost a year now... PKU is NOTa simple diet.. We are all different people too, even though we have PKU... What works for me, may not work for you... It is important to experiment the various things out there and find what works best for your body.. I know it is not easy.. I have been through it all and back... My message to everyone is - Don't give up! I will not let PKU defeat me as a person. I am determined. I hope this message gives you the courage and determination too! Best of luck to everyone else! alt

2 Reviews of A message to ALL people with PKU

  1. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Thank you for sharing with us. While PKU is a difficult disorder, it tends to be forgiving. That means you can always work on your diet- any time, any age and you will benefit from anything that gets you closer to a good PKU diet and formula intake.

    You will certainly keep control of your PKU. Thanks again!

    Stephanie

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Exactly… you may not have control of the past with PKU, but you certainly can control the present and future and make a big diffference! Thanks for the comment :) Best of luck with you too.

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