Here's how the PKU Conference helped me...

For those who don’t know, the PKU Conference is an annual event that is hosted by the National Society for Phenylketonuria, and runs over one weekend. It invites people of all ages who are living with PKU (and their families) and offers them the chance to meet other people who have the condition. There are also opportunities to attend cooking demonstrations and talks that cover subjects such as new research. It offers something for all ages – day trips are organised for the younger children whilst adults can attend the talks, etc. (I should also mention that as well as a conference being held in the UK, there are also international conferences).

I honestly think that the PKU Conference is such an amazing thing. I’ve only ever attended about three times in my life so far, the first of these being when I was about eight years old. I would say that this first experience of the conference marked a huge turning point in my life regarding my diet – it changed so much for both me and my parents. Up until this point we had always strictly followed the book (I think I explained in a previous post just how challenging this could sometimes be). But at that first conference we learnt that we longer had to go by the old- fashioned way of sticking to the book. Instead the protein amount could be simply worked out by looking on the back of any packet (provided it didn’t contain aspartame). A packet a crisps, for example, will typically say ‘per packet – 1.5grams of protein. This new way of calculating my exchanges opened up a whole new range of ‘normal foods’ to me that I had never even realised I could eat. Even small things such as eating ‘real’ chocolate for the first time were so exciting for me. I realise as I’m writing this now it probably seems so sad to the average person. But when you’ve only ever been allowed to eat special low-protein chocolate (and trust me it’s not the best tasting thing) and suddenly you can eat actual dairy milk – it’s just such an exciting time in life.

We were also introduced to the Fate bread at a cooking demonstration (Fate is one of the low-protein brands). This was another great thing that changed my diet massively. Prior to this I had always eaten other low-protein brands of bread, which I’m going to be honest tasted like actual cardboard, it was nasty stuff. I also specifically remember eating crackers and jam at school for a very long time (which probably explains my dislike of jam now). Anyway, at this cooking demonstration we learnt how to bake the bread from fresh. I’ve never found anything like the Fate bread, it's amazing because it so closely resembles the real thing. I always remember that every time my mum made a fresh loaf, my brother and I would bicker over who got first dibs on tasting that first piece (even though he doesn’t have PKU). I had a very long- lasting love for it; I continued to have it from this point right up until last year. The only reason I stopped is because since I’ve moved to being ‘off diet’ I’ve just found it more convenient to buy actual bread and also being in my final year of uni means I barely have time to make it anyway. For anyone who has PKU and hasn’t tried this bread, I urge you to and I doubt you will ever go back.

I’ve talked a lot about how the conference changed my life food wise. But something else which was in my opinion just as important (if not more), were the people I met. I’ve spoken before about how excluded I felt at school at dinner times. However, at the conference all of my anxieties were lifted away because you’re mixing with people who you know are just like you. Not just at dinner times though, but in general you are constantly surrounded by people who just get it and this is one of the main reasons why I love the conference. You can talk together and share stories with one another. At that first one I met so many lovely people, mostly on the day trips I went on as a kid, some of which I’m still in contact with today. I actually made a really good friend who I became pen pals with for a while (I’ve included a lovely photo of the two of us below).

Major throwback

The last conference I attended was back in 2014, the year before I was due to go to university and again it was so helpful. I went to some talks by people who had gone through university themselves and they spoke of their experiences. It gave me the confidence and reassurance I needed in preparation to deal with my diet independently.

So in some ways the conference really was revolutionary for us. We learnt how to deal with the diet from a whole new perspective, and I think that after this trip my diet relaxed slightly even though my protein allowance was still small. If you are living with PKU or you’re a parent of a child who has it, and you’ve not yet been to a conference I would just really encourage you to go. Even just going the once could influence your life massively. As for me I am definitely hoping to attend another one sometime in the future.

Me and my bro