Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • #6603
    Avatar of alesha
    PKUbGone81
    Member

    hello my names alesha i am 21 years old i live in nj i am just starting to go back on the diet. i have been stuggleing with this for a few years now and finally am so close to gettin it all under control. lookign foward to talking with everyone! if anyone has any suggestions id love to hear!

    #6604
    Avatar of
    Anonymous

    welcome Alesha! my name is Amanda i am also 21. i struggled with my pku all the way untill 2 yrs ago. i have CPKU . im from victoria BC. nice to meet you. as for suggestions.. ask alot questions. And feel free to ask me anything and i will try to answer them all!!

    #6623
    Avatar of Josephine
    vinny152
    Member

    I am new to this forum–and over 40.I have a sister who is moderately retarded-but had no tests for PKU at that time–and her condition was never discussed.In those days-it wasn’t”cool” to have a mental disability.I am sure I have a mutation of PKU-and was never tested.I have read a lot about Tetrahydrobiopterin Deficiency which eliminates the need for a strict diet. I am really interested in PKU–anyone else know about BH4(short for above) and where to be tested for this co-factor-thanks-vinny152

    #7637
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Alesha, nLate post,but i hope all is going well for you.
    Tracie-PKU

Viewing 4 posts - 1 through 4 (of 4 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional