Viewing 12 posts - 1 through 12 (of 12 total)
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    Avatar of Patti

    I feel like my brother and I re the only 50-somethings with PKU. I was diagnosed when I was 6 years old.

    Avatar of Anne Mc
    Anne Mc

    Hi there,
    I help to support a gentleman in his early 60s who has PKU. He has severe intellectual/learning disabilities and requires support for most of his day to day activities like washing and dressing, shopping socialising etc We do not have access to his old medical files but has been looked after in the community for about 7years without a low Phe diet. nHe has some behavioural problems as well but mostly used to just sit around all day,very lethargic and difficult to motivate. nBecause of his age he looks just like any other 60yr old man and as the oyher staff who look after him are untrained and inexperienced in learning disabilty or intellectual disability no one actually knew about his condition and the need to be on diet or at least referred to a specialist for advice.
    I am glad to say that he is now on a low Phe diet and within a very short time he had become more energetic and appeared to be enjoying his days more than before. he became very talkative and was smiling and laughing whereas before he was quite moody and as i said before uninterested and lethargic. nBecause the research on PKU is a bit ambiguous it is difficult for staff who have no formal training/experience to find the right information so Im so glad to have access to this site and the information it provides.

    Avatar of Patti

    Thanks Anne,
    It helps to know I’m not the only person over 30 with PKU. I am close to 80 miles from the nearest clinic and I can’t drive which makes treatment difficult bordering on impossible.

    Avatar of Anne Mc
    Anne Mc

    Hi patty,
    Im sure youre not lol nMust feel like it though with all these young ones nowdays. nMy friend is seen by a community dietician but I believe he is the only “mature” adult she sees. All her other clients are young adults or children . nStill its good to see how well the younger ones cope with the condition and this sites really good for information. nWishing you well (and your brother)

    Avatar of Sarah

    YOu are not the only ones out there. I am a 40 year old woman with PKU. I have just recently gone back on diet. I have had lots of success with it because Of the choices that are out there for foods and low-protein recipes that are out there. Hang in there! It only gets better!

    Avatar of Lisa

    My b/f is 43 and has PKU – he has to drive almost 4 hours to a clinic twice a year. Otherwise he just sees the community dietician monthly. We think there may be 1 other adult this dietician sees but we really have no one for support or to talk to about it. We also don’t have access to low-pro foods here; it can be tough.

    Avatar of Debbie

    Hi I will be turning 50 this year so it is comforting to see other people about my age on this forum.
    I was diagnosed at 2 years and 4 months and live in Sydney Australia. It is great to be on this forum as I enjoy reaching out to other people. My problem is usually finding enough time to do some low protein cooking as I work fulltime and am a part time student.

    Avatar of Tracie

    Hi Patti,
    I am another one who is 39 yrs.,and my closest clinic is a 7 hr. drive.
    I live in a community of 1100 people, and majority are children.
    I am the only one in my area who even knows PKU that includes my new Dietition who is 8 miles away from me.
    Sometimes i feel truley alone. nMy family lives in CA. and WI. and i am in Asotin WA. nAlot of my support comes from this sight.
    I am married , but sometimes i feel more of a burden on my husband than helpful. nSo i tend t do alot of research on my own. nHe would never say that ,but you know body language says alot.
    I am a at home mom, but my daughter is 10 yrs. nold.
    I am a recovering Anorexic, and very open about it.
    Not many people understand so i tend to get prejudged. ,but thats okay.
    I keep on truckin.
    Take care, nTracie

    Avatar of Lucy

    Hello to all those 50 year olds with PKU. I am 50 with PKU and am glad to find someone my age. I was diagnosed at birth with PKU. I was taken off diet at age 5 was off most of my life until my husband and I got pregnant. I was not the diet then. My daughter is grown and is only a carrier of PKU. She has 2 kids who are PKU free. Well worth staying on the diet when pregnant. I went on diet a few years ago and had to come off because of finances. I had no insurance and my dietition was trying to get me insurance help and no one would help. So I am off diet now and am considering going back on, but not sure I can swing it as I have no insurance and jobless at this time. Anyway still thinking about it. Thanks for listening.

    Avatar of Katie

    I too am over 40 w/ PKU. Iam off diet and have been for most of my life doing well, I think..My question is How can you all afford the diet?? the low pro foods drink mixes etc… My ins co won’t cover it due to it being a preexisting condition…I also wonder how your social lives are. Thanks for any info.

    Avatar of Jean

    Hi all you old rockers!
    this year I will turn 42. I was diagosed, by chance, when I was 3 months old. I was basically taken off the diet at age 11, developed and anxiety disorder in my early-mid 20’s, suffer from depression and tend to be agorophobic. I figure I’d probably be a bit odd even if I didn’t have pku! I refuse to believe that everything that goes wrong in my life is either my parents’ fault or because I have pku, but then I am in denial!
    I am trying to get back on diet and find it very hard. I would be lost and give up totally without sites like this.


    hi my name is billyjoe and i hve classical pku ni am 45 y/o adult i could use many friends b/c i like the commradre and i liek talking bac and for on a bd day right now i am pretty chipper i fond out my level on 2-23-09 was 19.4 mg/dl i also like the accountability factor so please feel freeto speak your mind nif i get offended it is my problem tha has always bene my philosiphy.

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