Community Discussion Forum Adults and PKU adults and pku Reply To: adults and pku

Avatar of

kerrie i know exactly how u feel , i have always felt like a medical guinea pic. and unfortatntly my clinic is an hr drive through my city and a 2 hr ferry ride to the main land then another hr through vancover. luckly i only have to go every 6 months , if i need more then that i can call them or email them. wich i find i do alot for advice and questions. exspcially lately cause im tryign to loose weigth and get healthier physically. nall i can tell u that it may be fursterating that its 4 hrs away but sometimes u just got to do it as much as it sucks and trust me for me it sucks cause i have anxiety and i have panic attakes when i go over. but i remind my slef that its only once in a while and its for a good reason, no reason is better then ur health. also the formaul is very very curcial for treatment so i would recommend that u start that asap. if u want more info i have a website also , u can see it at and i even have a page all about pku and trying to have a baby or get on track , even my own persoanl pku journal.
let me know id u have any more questions. sorry i cant be more help!

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