I have P.K.U and I have taken it.unfortunately I was a non-responder...but I am continuing to take the formula...and til this day its still nasty to me now 26...joshua miller
this drug will prob be super expensive and prob not covered. Your dieticians say its only for people with mild PKU? well wouldnt work for me. I have classical PKU. And learned to live with it. So, If they find a cure, cool! But I really don't find a diet that hard to stick with. Its just food we have to watch.. not like we have to inject ourselves with stuff or spend months getting traetments in the hospital right? good thing they figured out a diet plan that works.
Hi There, I have PKU also, and spoke with my dietitian recently this drug is only for patients who have a milder form of PKU. I for example will not be able to try this drug as i cannot produce any enzyme. Even if you have PKU in the milder form this is a new drug and not yet widely available. You will have to consult with your dietitian. Other than that i have no more info on Kuvan. There is talk of an injection of enzyme that may become available soon, maybe two injections per week! not nice
They just made it to where we can take this and it makes us able to have a higher phe intake. It's so expensive though X_X I think they said it was $1000 per pound!!!
I went to a PKU clinic in california and they talked about this. They used a lot of big words XD
no the disorder doesnt hurt us( if our diet is properly maintained) and the drug doesnt. it helps with the breakdown of phenylalanine :)
CrystalRocksThis 10 months ago
does it hurt them
SexyJamiesGirl 1 year ago
thank you, your video saved me..i have a project due about PKU and i couln't find any imformation about it
gabby6741 2 years ago
they havnt cured it man i was on this bullshit 2 times.... didnt work
NastynasThat 2 years ago
I have PKU as well and I am just going to contiue taking my regular formula.
goatmilk9 2 years ago
I have P.K.U and I have taken it.unfortunately I was a non-responder...but I am continuing to take the formula...and til this day its still nasty to me now 26...joshua miller
17Blueyes 2 years ago
this drug will prob be super expensive and prob not covered. Your dieticians say its only for people with mild PKU? well wouldnt work for me. I have classical PKU. And learned to live with it. So, If they find a cure, cool! But I really don't find a diet that hard to stick with. Its just food we have to watch.. not like we have to inject ourselves with stuff or spend months getting traetments in the hospital right? good thing they figured out a diet plan that works.
Cfranki001 2 years ago
Why no fair balance information?
johnjmack 2 years ago
i took this b4, didnt work for me... that sux
driftking4 3 years ago
Hi everyone,
i am 38 yrs old and have it.
I will be doing a study with Dr.R. Koch
in L.A. later in the month.
They call me borderline PKU.
shemp2142 3 years ago
Hi There, I have PKU also, and spoke with my dietitian recently this drug is only for patients who have a milder form of PKU. I for example will not be able to try this drug as i cannot produce any enzyme. Even if you have PKU in the milder form this is a new drug and not yet widely available. You will have to consult with your dietitian. Other than that i have no more info on Kuvan. There is talk of an injection of enzyme that may become available soon, maybe two injections per week! not nice
andreaswazzaup 3 years ago
are u tellin me they cured it?... my dietician hasnt told me this why? (i have it)
anyone know if this is in full use or any more info on it?
daveymickmc 3 years ago
Nope, they didn't cure PKU.
They just made it to where we can take this and it makes us able to have a higher phe intake. It's so expensive though X_X I think they said it was $1000 per pound!!!
I went to a PKU clinic in california and they talked about this. They used a lot of big words XD
IchigoDancerNyan 3 years ago