Hi I'm Chloe and I have PKU...
I guess I should begin by saying that I decided to start up this blog to try and help raise awareness for Phenylketonuria (or PKU for short) which is a pretty rare condition, yet something that I have been dealing with my whole life. But most importantly to hopefully be a source of help for people who are living with the condition too. It was sometimes a struggle for me growing up with PKU because for a long time I didn't know of anyone else who had it, but if I had been able to access something of this sort and to read about a person in a similar situation, I'm sure it would've given me the reassurance and confidence I needed. In this space I plan to share my own experiences and feelings of what it's been like for me in the past twenty years growing up and learning to cope with the condition.
So for those who are new to this, PKU is something I was born with and to put it as simply as I can, it basically means my body can't break down large amounts of protein (and if we're going to get all sci-ency, it's because of an missing enzyme in my liver). Anyway, due to this I have to carefully monitor how much protein I consume daily. To make up for the lost goodness, other people get from eating protein, I also have to take a 'protein substitute' twice a day and also regularly keep track of my blood levels. Over the years my protein allowance has significantly increased; when I was around four years old I was only allowed 4 grams (or 'exchanges') of protein per day, but last year I was just put up to 30 exchanges per day. (To put this into better perspective, one slice of bread alone can have 3- 4 grams of protein in). Unfortunately, this condition is something that will never go away, but it certainly has become A LOT easier to deal with as I've gotten older.
I'll be delving more into my past experiences in other posts where I'll talk about how it was for me going through school, going out with my friends in my teens and what my first PKU conference experience was like. But for now I just wanted to say hello and if you are also living with PKU I really hope this blog will be of some help to you.
Look forward to reading your blogs again - Hannah
ReplyDeleteThank you!
DeleteHi, Chloe! Our son has PKU and is turning 1 next month. Is there a way to subscribe to receive your updates? I'd love to hear about your experiences throughout your life! Thank you for being willing to share!
ReplyDeleteHi Stephanie, you can either follow my page on here or alternatively you can find me on Facebook, every time I post an update I'll be sharing it to my Facebook page as well. It's no problem, I'm so glad I can be of some help!
DeleteChloe- Hi! My daughter is 5 and has PKU. She is allowed around 4 g of protein a day( we count phe though, so around 230mg) thank you for starting this, I could see my daughter as she grows wanting to read something like this. Do you have siblings? Also are you on Kuvan or something? I was just confused about your substantial increase in protein. That is typically not the case(protein allowance does not increase with age) just curious! Maybe you could write about your experience if you are?
ReplyDeleteHi Emele! Ah thank you, I'm happy to share! I do have siblings although they do not have PKU. And I'm not on Kuvan - a few years ago I was told that I only have a mild case of PKU, although I had been living up until then as if I had a classical case. But my protein allowance didn't just jump straight from 4 to 30 g, it's gradually increased over the years... I plan on writing a post on how my diet has developed over the years, so I'll definitely go into a little more detail then!
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