PKU.com Community Discussion Forum New to PKU.com Is there a hope for PKU cure?

Viewing 10 posts - 1 through 10 (of 10 total)
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  • #4511
    Avatar of sandra
    sirik0802
    Member

    Hello everyone! It’s been a couple of months I’ve learnt about PKU and I am really curious about it.
    I just started gaining info on it and wondering if there is hope one day they can find cure for it

    #4517
    Avatar of Rebecca
    splshglitter
    Member

    what is your email..i will send you short article on what i have from pku news. i tried copying a pasting it, but it did not work.

    #4534
    Avatar of sandra
    sirik0802
    Member

    hi, thank you for your reply. I would be very thankful to you if you sent me the info you have on pku. Do you have pku yourself? I wana figure it this pku out, is it smth gangerous, very serious, or not? I have never heard of a person whose brain has been damaged by pku, maybe it is not such a big deal, i also read about a person who found out about her pku when she became teenage and no signs of abnormality.
    please send me the info you have
    sirikgl@yahoo.com
    thank you

    #4535
    Avatar of Breanna
    BreaMarie91
    Member

    Hi, I’m 15 and I have PKU (diagonised at birth). As for PKU being dangerous, it’s not, as long as you follow the strict diet and drink the formula you will be fine. When you ask if it is serious, yes it is, though like I said, if you handle it right you can live a happy and normal life.
    I just thought I’d put in my two bits worth nBreanna n15 w/CPKU

    #4538
    Avatar of sara
    chiquita
    Member

    hi, i am the same person who asked “is there a hope to cure pku?” please notify me with anything interesting you have on pku.

    #4545
    Avatar of Julie
    juliaccheek
    Member

    [FONT=Arial][SIZE=12][COLOR=blue]I’m writing in response to BreaMarie91. I was so encouraged to read your positive message! My two week old son has just been diagnosed with PKU, and I am trying to learn as much as I can about it for him. It’s great that your mom has been such a wonderful support for you. I’d like to know if you have any advice for moms of other children with PKU. What are some of the things your mom did that helped you as you were growing up and dealing with PKU? Was it hard to have brothers/ sisters without PKU? Thanks, and good luck with your dancing! I am sure your mom is very proud of you.

    #4548
    Avatar of Breanna
    BreaMarie91
    Member

    Julia, first of all yes my mom has been there all the way for me and my little sister. Whenever others had snacks that I couldn’t have she always made sure to have something else for me. The same with my grandma, she always makes sure to have fruit snacks or starbursts or something. With the formula she has realized that yes, she has to make sure me and my sister have to drink it, but also that she can’t push us to hard on it because eventually we’ll have to do this all on our own. Well maybe not totally on our own.
    Also she tried to make sure as I was growing up and was younger that when everyone had dinner I had something similar. If everyone had Cheese sandwichs she gave me a low pro sandwich with either jelly or something else. There are so many other things I could list that my mother has done but that would take to long. Basically what I’m saying is as your child grows up just be there for them and be open to hear what their thoughts on PKU are and they will be just fine. nBreanna

    #4549
    Avatar of Breanna
    BreaMarie91
    Member

    Oh one more thing. About it being hard with non PKU siblings, it hasn’t been hard. My older sister and older brother knew since the day I was born not to give me food without asking my parents and my entire family has been supportive. I think that is the main key to raising a child with PKU, giving them support and making sure they know they can do anything any other kid can.
    As for my little sister, Erica, I think she’ll have it much better because all throughout her life she’s had someone else with PKU in her life. So to answer your question, having non-PKU siblings hasn’t been hard because we try not to make PKU an issue or ‘problem’ it’s just a part of our daily life. nBreanna

    #4562
    Avatar of Rebecca
    splshglitter
    Member

    hi sirik or chiquita… i am sorry i have not been on forum for a time. i will email you that info.

    #6397
    Avatar of Jack
    JackJack
    Member

    I Hope so there’s nothing wrong with it but I hope the can get a cure for it!

Viewing 10 posts - 1 through 10 (of 10 total)
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