Aside from the day-to-day tasks of managing PKU, these are some life transitions and stages that most people have the opportunity to go through, but maybe not with PKU, which makes for a different journey...
Growing up with PKU
I grew up in the 80s and 90s, before googling PKU guidelines and recipe ideas on the internet was a thing, but I had very supportive parents and being an only child, I generally didn’t question the fact that I had PKU.
As I didn’t have much to compare it to, my parents took on the mental organisation and preparation that goes into managing PKU. My mum said it was hard when they found out I had PKU as a newborn, but she explains how they just got on with it, it brought my parents closer together as a family and they made some conscious decisions to focus on how to make it better.
At school I had some great friends, where I didn’t feel excluded for having PKU. I didn’t feel like anyone overly noticed what I could and couldn’t eat and I didn’t focus on it too much. My teachers were all told that I was on a ‘special diet’ and I remember this was explained wherever I went where there was food.
With my parents taking on the PKU management and responsibility, I was pretty free to just be a kid. I attended regular PKU clinics at the Children’s hospital and when I was quite young, my parents went to the organised PKU picnics and bbqs with other PKU families.
We moved as a family, to regional Australia when I was 8 and I remember a very different hospital experience. The services offered were not to the same capital city standard which was tricky.
Because my levels were kept in an ideal range, I progressed well through school, in some cases I was in advanced classes for English and Maths.
I attribute this to the focus on my diet, development and our family valuing education. I remember having frequent IQ tests at the children’s hospital and going for frequent morning blood tests.
Uni and leaving home
After high school I studied Commerce at university and got my first job in industry due to being the top candidate for an internship program.
Like anyone starting their first job, this was a big adjustment for me, and I felt the business world wasn’t for me just yet, so I set my sails to Queensland to work as a lifeguard on an island.
This was my first-time leaving home at 22, and I remember my mum being okay with it, because the resort I would be working at had an open buffet for breakfast, lunch and dinner. This meant I could easily choose low PKU options from the buffet for every meal and I didn’t have the stress of preparing my own food.
Travelling solo with PKU
When I was 25, I travelled to the US on a student visa for four months and worked at a ski resort.
This was a bit more challenging, as shipping my PKU formula to the US from Australia was tricky and the packages got held up in customs. There was a timeframe where I went without my PKU formula which was very stressful as I rarely miss taking it. In hindsight I could have discussed the trip with my PKU clinic who may have been able to advise local US services and make it an easier process.
Moving out of home ‘officially’ with PKU
To my surprise, I faced the most PKU challenges when I officially moved out of home in my own town. I went through an independence and slightly rebellious phase, where I was mostly in denial about having PKU, I thought very rarely about it and basically ate a “vegan diet” with minimal blood tests. But I got through it which built up my resilience, and I did have the sense to continue strictly with my formula during this time.
I really learnt how important the PKU diet is during this time too, and how big an impact it has on my brain, even though I had always thought, I couldn’t feel or tell any changes. I learn that the people closest to me can tell when I’m more stressed than usual and not as ‘even’ or balanced.
Today, I believe my PKU experiences have made me a healthier and more responsible adult. I’m quite career-orientated, working in a professional communications team and I’m more motivated to maintain an optimum work-life balance due to having PKU. I’ve tried to strengthen myself through any PKU challenges, and keep a balanced perspective about it all. I detail how I do with this here: Developing a positive PKU mindset