Community Discussion Forum New to PKU cure? Reply To: PKU cure?

Avatar of Jennifer

Brea, thats awesome. u really did ur research. after reading ur info about ur experience with kuvan i’d be willing to try it myself. i am a little scared of the long term side effects, but it’s really hard for me to maintain a low level. finding low pro food in a college cafeteria is DIFFICULT and i cant cook a lot of my own food as long as i live in the dorms. if kuvan could help lower my phe to ideal levels than maybe its worth the risk?? i don’t FEEL foggy or anxious or scatter-brained when i eat too much phe, but i’m betting my grades would reflect a lower blood phe level. i have a couple questions for u. u dont have to answer if they’re too personal. when u were younger and less strick with ur diet, what was different? your mood? your focus? and how does that compare to what u feel now? i never had problems in high school, but now in college i have to keep straight A’s to maintain my scholarship. it’s REALLY tough and i need to do everything i can to be at my best. after you started taking kuvan, how long did it take for u to start to respond? did u notice any side effects when u took it? and now that ur phe tolerance is a lot higher, what have u changed diet-wise, if anything? thanx for ur thorough answers!! i know u dont recieve pku news, but i would consider writing to them to tell them about ur success with kuvan. i think u would sway the decisions of a lot of people.

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