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.
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School
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.
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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.
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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
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