Community Discussion Forum New to Can Anyone Help? Reply To: Can Anyone Help?


Hi Jen, My name is Bella I’m 22 and I have PKU too. I live in the Midlands in England. I was very good with my diet up until the age of about 15 thanks to my mum and dad. But then I came off diet until last year. For a while when I came back on to diet I was really enthusiatic with taking my supplements. But then the novelty wore off and trying to take 85 tablets when doing 12hr shifts as i was training to be a paediatric nurse just wasnt going to work!!! I’m just about to start a new job as a nurse and so have thought to myself new job new beginnings! I’m finding it very hard especially wen going out for dinner to choose sumthing I’m allowed after eating meat previously! I think the best advice I can give is perhaps get sum1 to remind you to take ur supplement at the right times or set alarms on your fone. I find I’ll take it if my mum bugs me enough or if I’m reminded, otherwise I’m too busy doing other stuff! With diet I think you’ve just gota be determined and either cut out the bad stuff completely or be gud for say a week and eat everything your supposed to,hen perhaps treat yourself. Because I’ve found even if ihavent been really gud and perhaps have eaten a bit of chicken or sumthin as long as i take all my supplent my levels are still 700 or below. You’ve just gota be strong and strict with yourself. L know its hard and I’m having problems myself at the mo. But I’m determined to get a new supplement better suited to me and get myself sorted. If you wana keep in contact. We can encourage each other, reply and I will give you my email.

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