I'm 22 years old, live in london (UK) and have been a patient of PKU. I came off the diet when i was 18, only because i started straying off the diet and was not being strict about it. My life of being on the diet was good, although i did have some ups and downs about it in my early teens, however now i can see i am doing well, got a degree from university, have a full-time job and hoping to get married soon! soo my message to everyone……don't lose hope…….the funny thing is coming off the diet you eventually almost forget about PKU, the only time you remember is for those yearly checkups at the hospital…..however, i've noticed coming off the diet has now made me MORE interested in knowing about PKU rather than when i was on it……..
anyway im looking forward to sharing my epxeriences of having PKU and learning from others too. The reason i joined this forum is because i feel like im forgetting about PKU, which i do not want to do as it's a part of me. even though im not on the diet anymore i still want to learn more about it. i guess also because growing up i never really went to PKU activities or joined in PKU groups so it's quite overwhelming to see there are so many people out there who also have PKU like me and have epxerienced similar things….. I must admit i miss being on the diet a bit but i am happy where i am……i'm still doing well with myself, my life hasn't spiralled out of control, so my doctor suggests that i should stick with where i am as im doing so well. it's quite unusual for me to read about people who have come off the diet and started experiencing extreme, mood swings, depression, anxiety problems etc…..im glad to know im an example of how there's always a light at the of the tunnel….and not everyone goes off the rails….
anyway that's enough from me……i look forward to participating in discussions and sharing my experiences