PKU.com Community Discussion Forum That’s PKU life! PKU research project

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #8451
    Avatar of Philip
    pmahe06
    Member

    Hi guys & girls,
    My names Philip Maher, i'm an undergraduate in Dundalk I.T., Ireland studying Health Promotion & Physical Activity & as part of my final year am doing an assignment on Phenylketonuria (PKU) & the lived experiance.
    At present I have the main body of knowledge gathered & am working on the lived experiance. As i have not had much interaction with people with PKU i was hoping that through the online community you could help me by talking about what it's like to have PKU. Be it day to day living, work, as a child or socially.
    If you can help i would genuinly appreciate it, either on the topic board or by email to pmahe06@studentmail.dkit.ie.

    Yours sincerly

    Philip Maher  

    #8452
    Avatar of Nicole
    Nicole1982
    Member

     Hi there.

    My names Nicole, am 27 years old and i have severe classical PKU, and live in Scotland, UK,  i  have experience with living life with PKU and being through the Maternal side of PKU twice and i would be happy to help out.

    My email is nicole.gillies@yahoo.co.uk, feel free to contact me any time, i would be happy to help!

    Nicole 

    #8454
    Avatar of Katie
    katiemag16
    Participant

     Hello,

    My name is Katie and live in New York.  I am 24 years old and have PKU.  I would be happy to help you out with your project.  My e-mail is katiemag16@aol.com.  Send me an e-mail if you need my help!

    Katie

    #8455
    Avatar of Katie
    katiemag16
    Participant

     Hello,

    My name is Katie and live in New York.  I am 24 years old and have PKU.  I would be happy to help you out with your project.  My e-mail is katiemag16@aol.com.  Send me an e-mail if you need my help!

    Katie

    #8459
    Avatar of Philip
    pmahe06
    Member

    Hi guys

    Thanks to everyone who's got back to me in the last week. I'm gettin loads of great feedback.

    The more information i get the better & when i complete the study i'll make sure post it up here.

    Thanks again

    Philip Maher

    #8472
    Avatar of Emily
    Emsilly24
    Member

    Hi Philip,

    I don't know if you still need more help, but if you do my email is ryan.emilyk@gmail.com. I'd be happy to tell you anything you want to know!

    Emily

     
    #8488
    Avatar of Eugene
    Eugene
    Participant

    It seems that I have had a very wild ride with my PKU. It has never effected me since 1974 but 34 years later it got worse and started to interact with my Hypoglycemia. Now I am trying to figure out the balance between protein intake and carbs. Curretly, or I should say, monday my levels were 1600 and I expect them to be higher this comming monday. My problem is that if I have too many carbs, mostly sugar, I get EXTREMELY sick. Complex carbs are not much better but I can take it for a longer period of time. Now I know more about how PKU feels and what happens to me or my brain I should say, when my hypoglycemia and PKU interact. I have to get my levels down soon. I can't think very well right now but I have code to write for both work and my PKU Tool.

    If you are intrested, you can email me at erutkofske@PKUTools.com. I am not the norm for sure. Don't know if  I would help or really mess with your expected results.

    Eugene aka bad_code (www.0x0BADCODE.com)

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