PKU.com Community Discussion Forum New to PKU.com New to Pku site

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #5097
    Avatar of Dianne
    dianne
    Member

    I am new to this site and would love to hear from people who are in their forties who have lived with Pku and are off the diet, what are your experiences? Do you find doctors and nutritionists ignorant of this condition? Like I have found. Did you experience prejudice like I did when I was at school and later in life trying to get into the military? [/FONT][FONT=Arial]

    #5104
    Avatar of kenneth
    ken1965
    Member

    Dear Diane, nHi my name is Ken and I am 41 years old and have had PKU since I was an infant. I have found that many doctors are ignorant of this and well I too did have a hard time getting into the service but I did get in and have been in the Army for 17 years on and off. I still am in the army and have just a few more years until I retire.Most doctorsthat I have run into especially military doctors say that it is just a childhood disease,and that we have grown out of this.

    #5106
    Avatar of debbie
    debbieco
    Member

    My name is Debbie and I am 48 years old diagnosed with PKU in 1961 at 2 years and 4 months. About thirty years ago I went off diet as the medical professionals were doing that with people with PKU at that stage. The medical professionals are learning with us. Some of my great friends are medical professionals which I am so glad about but like anything a person has to shop around for good care.
    I have come across ignorant people and really caring people as well! nSome people do treat me second rate citizen which bugs me a lot but they are stupid and ignorant!!!!

    #5110
    Avatar of Dianne
    dianne
    Member

    Dear Ken,
    I am so glad I am not alone in this, although it certainly feels like it as there is no follow up or further contact with my doctor ( who is now deceased) or my dietitian. It is good that you were able to get into the Army, it goes to show that they aren’t always right. In Australia the doctors seem to concentrate on the children or parents of children, do you have adult support where you come from? I have lost contact with the other PKU kids as well, I don’t know what happened to them.

    #5229
    Avatar of Nicki
    youngnicki
    Member

    this is my moms pro i have PKU it stiks not being able to eat reguler but no i have PRE-KUNIL IT LETS ME EAT A LITTLE BIT REGULER its perdy cool ask your doctor for PRE-KUNIL

    #5230
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Nicki, I was going to try those once but I figured since things just started getting easier for me I miswell not do anything that could mess me up. I was just wondering how old you are Nicki? I’m 15. nBreanna

Viewing 6 posts - 1 through 6 (of 6 total)
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