Hi there i'm from Ireland i'm 16 and i have pku (for anyone who wants to know my allowance is 27g a day and i take maxamum 2 times a day but both my allowance and the drink cause problems for me) i see you said pku is actually irresversible brain damage and i was wondering if you could elaborate ir explain is that for all people with pku?? I've never been told the exact facts behind pku and i'd really like someone's info
Hello! I’m sorry I’ve not been on tumblr lately to reply to this, so what I have learnt so far (super simply because I’m not a scientist!)
PKU is a metabolic disorder, our metabolic system is what breaks down our food to use it for energy, growth etc. our bodies are missing the animo acid to break down proteins (phenylalanine or phe) this means we get a build up in our blood system of too much phe which can damage our brains, which is why we have the monthly blood tests. Our blood levels are supposed to be under 600phe, the ‘normal’ person levels is usually under 100. Which is why pregnancy is such a massive deal so we don’t poison our own child!
It’s crucial to find to asap in babies as that is of course when your brain is developing the most and anyone undiagnosed at such a young age is likely to suffer with some if not terrible brain damage.
As for whether it affects all diagnosed children/teens/adults I learned at the ESPKU Conference there are over 380 different types of PKU and every PKU I have met have had different types, I am classical PKU on 4-5g a day and 3 drinks and I do feel effects if I over eat on my diet (slurred words, headaches, unable to concentrate) where I have met someone who is also classical PKU yet feels no effects!
Your best chance is to know your own person limits and stick on the diet the best you can and have your drinks! As not only does it give you your protein supplements but acts in the same way as diabetics having insulin it does actually help bring your levels down.
It’s really really REALLY hard, I’m 23, nearly 24 and I’m still trying to get my head around my diet so don’t ever feel stupid if you are struggling.
For me, my priorities are getting my drinks down me and eating as much low protein food as possible so I don’t have protein, I don’t even bother to count exchanges these days. It doesn’t do me any favours mentally, it just makes me more aware of how limited I am and it screws me up so I end up going on a massive binge!
You need to do what is right for you and your lifestyle, as long as your levels are in good form then your doctors that see you one every six months and have no idea the life you actually live can’t say anything.
I hope that helps and sorry if you did know some of those facts already! Just thought I’d explain from the beginning :D
I’m always here for anyone who needs help with their PKU, I don’t claim to be perfect or any good at it! I’m still learning myself but I may just be a little bit further down the road so even if I might be able to help you see the light at the end tunnel or just someone to moan at when your friends and family don’t get it, I’m always here!
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