PKU.com Community Discussion Forum Parent support Hi from Cornwall England Reply To: Hi from Cornwall England

#7694
Avatar of Tracie
Tracie_PKU
Member

Hi Sue,
I am Tracie i as born in Manchester England back in 1969.I know i’m old.LOL
I am PKU,and when my MUM and Dad found out they moved to the states being i was first generation.
I have Borderline-Pku,and my Doctor says i have a rare mutation that Kuvan would benifit me.
I accepted ur friend req.,and maybe i can help ur son. nBless his heart its hard when ur a child,but it does get easier when u grow up. nMay i ask what kind of PKU does he have?
If u are interested in Kuvan have his Dr. talk to u to see if it would benifit him! nThen have him (His Dr.) contact Biomarin (that is the maker of Kuvan),they will send u a 45 day free trial.(I can give u the # too.) nKeep me posted,and i will find out any and all info for u.
I am a strict Vegitarian,but i’m allowed 60 grams of protein a day or 2700 PHE’s.I don’t eat no meat,fish of any kind.So i eat tofu,cheese,and lots of veggies. nHang in there.
I’m here for u and ur son.
I found out that the more knowledge u can have about PKU the more its easier 4 ur whole family. nTell your son he can do anything He wants in life.He just eats a special diet. nThats it.(If he wants to talk i’m here 4 him) nCurrently i take Phenex 2,and about 45 pills a day,but when i start Kuvan it will take me down to 10 pills aday.(thank god)
Take care, nTalk to me anytime. nYour Friend, nTracie-PKU

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