Life as an adult with PKU!

Life as an adult with PKU!

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Life as an adult with PKU!

July 30, 2009 in Uncategorized

Its always interesting to me as an adult with classic PKU who is currently off diet and has been for the last 5 years and in fact the majority of my life, how the worry never leaves me that I may be doing irreversible damage to my body by eating a fairly normal diet..when I say normal I am not eating meat but eat most other things.I am not taking the formulas and am not really doing anything I "Should" be. I feel that being born in the 1970's has disadvantaged me as I no longer have a speacialist doctor to go to for advice and being a nurse myself I am very aware of how medical circles work. I feel some information given to patients is not always for their higher good but can in some cases benefit the doctors themselves. I have felt a test case bunny all my life with each doctor having differing ideas with regard to PKU treatment. Therefore I have chosen to question their advice re "diet for Life" for all PKU's..I dont believe this to be true, as we all know we are all individuals within this rare disorder and there is so much untapped research that needs to done especially for some one in my age group who has passed the Maternal stage of life and heading into ageing. The more I search for information the more I am left with questions about the effects in particular on PKU and the ageing process and what it may mean for anyone in a similar situation. My partner and I have no children because of my pku and other life choices, and in regard to close relationships I have always struggled with explaining to people this condition so much in fact i have never really addressed it unless I had to and even then I spent a lifetime of not explaining it to friends/Collegues and even family. This has made me feel somewhat misunderstood by even some of my closest family and friends. In most cases it has been my lack of understanding and acceptance of it myself coupled with the resistance of others that has basically prompted me to just "Go With The Flow" attitude. However I do feel I have been blessed to have a normal life - Whatever that maybe? We are power in our own lives no matter what advice we are given and we know how we feel and experience life within our own bodies. I feel sometimes the psychological aspects of having this metabolic disorder almost far outwiegh some of the physical this I mean the feelings of aloneness in this conditon, as like me many have not met others with the condition and the need to fit in which as huge factor for me when at school.. I guess that this just highlights the importance now of Online blogs and email so people with PKU from all over the world may share ideas and stories..I welcome any comments on these thoughts and hope to share more in the future..happy blogging!! :)

5 Reviews of Life as an adult with PKU!

  1. Registered: Jan 12, 2006

    Posts: 0

    , Alabama

    Loved reading your blog and can relate a lot to feeling guilty at times when I am not “following” the diet. However, I have come to realize that I need to respect my body and the need to have a balanced diet. I also don’t eat meat, but a times may binge on good. Exercising and keeping a healthy mind is the key for me.

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Great blog… I can relate with the feeling of being “alone” at times. I felt more like this when I was younger, however as I got older (I am 24 now), I have found my friends and colleagues to be very supportive and care to listen when I do want to explain my diet to them. I never had an issue of eating the right foods for the PKU diet, however I did struggle with formula intake… this too caused issues for me (and even recently). I finally found a formula (which is more a fruit drink) that works for me. I truely feel a difference emotionally and physically. I know you said in your blog you do not see a clinician anymore, however have you ever tried or considered taking Kuvan? Or ever heard of it?

  3. Registered: Mar 18, 2006

    Posts: 0

    kernersville, North Carolina

    i’m 49 and have clasical pku. i was off diet( didn’t know i needed to be on it) until i was 44. I’ve been on the diet for 5 yeras and have struggled with my levels since the beginning. personally, i feel that if you were off the diet for a few years( i’ve read as little as 5) the damage is already done. i actually am disabled( social security disability) because of the effects that my pku( late diagnosis, i was 8 and lack of treatment) has had on me and my ability to relate to people and work a job. i’m seriously considering going off diet because it’s too expensive and to much of a hassle to keep my levels low. even with kuvan i have levels consistantly between 550 and 900…way too high being on kuvan. the problem here is also that i have severe uncontrolled asthma and my “people” tell me that these constant asthma issues are keeping my levels well above where they need to be….sometimes it’s just not worth all the hassle…it’s not as if pku will kill me but asthma might.

  4. Registered: Mar 18, 2006

    Posts: 0

    kernersville, North Carolina

    i just found your blog…i have to tell you, if you haven’t been on the diet for most of your life and are not on it now i feel like no great’s why… i was born in 1960, noone knew anything about pku and what little they told me turened oout to be wrong. personally, i think that if you’re eating what you want and not on the diet and your life is going well then keep on because any damage done was done in the first several yrs of your life,that’s done and not reversible anyway. don’t try to explain pku to anybody cause they won’t understand it. if you’re not on the diet why even go through the hassle of trying to explain to anyone that you have pku and what it is. you don;t eat meat just tell them you’re a vegetarian and leave it at that …people get it when you say “i don’t eat meat , i’m a vegetarian.” but try explaining how and why it is that you can’t have protien because you have pku( which they ‘ve never heared of) then try to explain about metabolism and al that. make it simple

  5. Registered: Mar 15, 2010

    Posts: 0


    Hi i jist read your blogg, and fund it interesting, i myslf have pku and am 44, i have 2 children, and they don’t have it.
    i try to watch my diet. and have been on and off over the years,
    I feel it was really important during pregenancy.

    I live in n.ireland, Belfast and have 2 cousins with pku in Australia,
    Don’t know many people with pku. but hope to share some stories with people in line.

    bye 4 now


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