Lving with PKU

Lving with PKU

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Lving with PKU

July 27, 2009 in Uncategorized

Hi, my name is Donna and I have PKU. I am looking to find friends that could help me live a normal life.

7 Reviews of Lving with PKU

  1. Registered: Apr 12, 2008

    Posts: 0

    Redding, California

    Why do you think your life isn’t normal? How can we help you?

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Donna,

    How old are you and where are you from? I am Katie, 24 years old, and from NY. I have PKU too.

  3. Registered: Nov 29, 2007

    Posts: 0

    CAMPBELLTON, New Brunswick

    Hi Katiemag16 and Ramona. Thank you so much for taking the time to read my blog and took the time to respond. Thank you so much. I am 41 years old and from northern New Brunswick. I was born with PKU but was never diagnozed by my family doctor. I had been tested for my protien levels but never got the results back. Once i get diagonzed by my doctor than I would register with a clinic in montreal that end me my full diet of the food I can eat. Also I will be sent to a Sleep Room in Monton, New Brunswick to be put on the proper diet. But until I get properly tested, I cant get any treatment so I have been studing it myself but it hard. I need to know what are the symtoms of having your protien levels either too high or too low.I learned there is a meter for me to test myself like diabetics do. I am looking for one of these. Any information about where I can get tested would be apprieated. Thank you again for checking my blog! :)

  4. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi donnahon… this is Katie… Do you mean New Brunswick, NJ? I have a friend who lives near there and I will find out the name of the hospital where his clinic is located and the name of his dietitian. Hang in there with the diet – you will get the help you need! Some symptoms you might feel with higher levels are depression, moodiness, irritable, extremely tired, difficulty attending and communicating, hard time organizing, etc. I used to have some of these symptoms, however now that I have more control of my diet – I feel more energized, happier, able to do more in a given day, and overall I feel much healthier… I will keep you posted about the clinic… hang in there : )

    When did you get diagnosed with PKU? And how long have you been trying to get your protein levels tested? The doctor who diagnosed you with PKU could not tell you where to get these levels tested?

  5. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    just to let you know i read your blog also. I hope that life is better for you. Looks like you have a lot of good info already. I am 49 and have pku .. its doable even if a bit challenging now and then

  6. Registered: Mar 19, 2009

    Posts: 0

    Tremonton, Utah

    hi i’m new to bloging i’m 30 and have 4 kids and i have a hard time staying on diet but i do fine when im expecting thne i have the baby and off the diet i go even though i know how much better i feel when i’m on diet its hard its kind of like and addiction to the protien foods you know there bad and they can hurt you but you need it

  7. Registered: Nov 29, 2007

    Posts: 0

    CAMPBELLTON, New Brunswick

    Hi, I live in Campbellton, New Brunswick, Canada. I was tested by my doctor for PKU last January and my docotr claims he didnt get the result back. He didnt want to test me for PKU cause he claimed that if I had PKU then I would be mentally retarded. Finally after years of bugging him to test me, he sents me for the test but I never got the result. I will go get restested. I realized I had PKU when I read that if you cant make a U-shape with your tongue then you got a defected gene which also causes PKU. I found enzyme pills at Shoppers Drug Mart that help digest protien, carbohydrates and fats. They work good. I was able to eat garlic last night and I was not sick. That was awesome. I am looking to g3et myself a meter to test myself. Maybe if my doctor see my protien levels high, he will take me serious and treat me. Thank you for your time and support.

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