Community Discussion Forum That’s PKU life! How do they get away with it? Reply To: How do they get away with it?

Avatar of

poppy corn , i so agree with u, atleast u can find the foods in a health store , i have to specail order mine from the mainland and it takes a week to get it and i spend 100 dollars extra a month for food , not on top of my regular grocieries. . it is finacly breaking espeically if ur a student, comem from a big family or are a young couple stuggling to stay on top of it all. like me and my boyfriend i had a bad knee injury and couldnt work for a year and had no income coming in, he had to pay all the bills, rent, grociers and low protein foods and other exspenxes and on top of it he was startign his own business. nunfortualy since there is not alot know about pku theres not alot of coverage but it does vary all over the world, forinstance my formula is coverd and not my food here in BC , in Qubec( wich is in canada, ) has everythign covered.
this is why i decided to organize a walk a thon for pku and donate the money to a “food fund” so ppl who cant affod the foods can still get them. its also why i have my website and why im trying to write a letter along with my clinic to our MPS and lobby for coverage. ni would recomend anyoen doing that. infact if u go to the pku message portal there is a whole discussion on it and what others are trying to do ! nanyways just wanted to tell u that i understand and ur not alone in feeling like this! wish i could 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