PKU.com Community Discussion Forum New to PKU.com Research for a project

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #9454
    Avatar of
    Anonymous

     I am doing research on PKU  for a project and I am looking for people who have it to share their  personal and emotional hardships with this disorder. It has been hard to find that considering most websites just talk about the medical affects. I am looking forward to hearing your stories
     Pleas try and get them to me by 4/14/11

    #9455
    Avatar of Sarah
    sarahl
    Participant

    Hi, send me an email with questions and I would be happy to answer.

    #9458
    Avatar of
    Anonymous

     Mainly I am looking for some medical and social impacts PKU has had on you. More social than medical, thanks! :)

    #9459
    Avatar of sophia
    pku123
    Member

     Hi guys, I'm new on this site and its because Im doing research and a presentation on people who have PKU.
    I've done alot of research this past week but im still a little confused! I was hoping anyone on this site would be able to help :-)
    I understand people with PKU need to drink a formula starting at a very young age. Does one drink the formula forever? I watched a few youtube videos where a pku patient was taking supplmental pills AND a formula. Is this needed? (what are the pills?–do you take the pills instead of a formula when you get older?)

    Basically, Im just wondering–what supplments MUST somebody take everyday if they have pku? and Wha are the phe levels that you MUST stay under/above? Are there certain corresponding numbers or a ratio of phe you must stay under? I keep seeing refrences on websites about maintaing certain Phe levels/numbers….but can anybody tell me what this is?

    Thank you all so much!! youre all amazing!!! and I'm glad I have the opportunity to do a presentation on PKU and learn more about your lifestyles!!!!

    #9460
    Avatar of Chris
    TKEchris
    Member

    Hey, shoot me a message with questions because it has different effects for men and women.

    #9461
    Avatar of Chris
    TKEchris
    Member

    Due to long text data is deleted

    #9462
    Avatar of sophia
    pku123
    Member

    Also,
    Ive read a few times that insurance doesn't cover formula for pku. If you dont mind me asking, how much do you have to pay for your phenylade (or other types of formula) on a monthly basis? and how long does the formula last? is it very expensive?

Viewing 7 posts - 1 through 7 (of 7 total)
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