About

I was born in the UK during the late 1970s with the metabolic condition Phenylketonuria (PKU).

I started this blog originally as a personal journal to help myself stay focused on returning to the low protein diet after many years. It was during this process that I quickly realised how important it would be to share my experiences. Starting with growing up as an isolated child with PKU in a pre-social media era and navigating my teens during the 90s, feeling like the only person in the world with PKU. I also continue by sharing the freedom and ‘normality’ I found after coming off the diet for over a decade and then the long battle returning to a restrictive PKU diet. These lived experiences form the perfect backdrop for my well-known honest, approach to sharing experiences and raising awareness for this complex metabolic disorder.

This blog started life as a personal journal. A place I unloaded my thoughts and frustrations. An outlet that really helped me focus on returning to diet. Having been so isolated as a child during the 1980s, I soon realised it was important sharing the reality of living with PKU — not just the parts that are easy to talk about, but also the struggles, frustrations, successes and experiences that often happen away from the clinic.

Life with PKU isn’t always neat, simple or easy. So, here I try to explore the realities of living with the condition – including the uncomfortable, frustrating and sometimes difficult parts that don’t always get talked about.

Since I started this blog 5 years ago, my interest has increasingly been pulled beyond my own lived experiences. Hearing stories from other community members made me realise I have a responsibility to speak on behalf of those who do not have a voice. As my blog moves into its 6^th year, my focus shifts to raising awareness and bringing change.  

Want to explore?

Whether you’re living with PKU, supporting someone who is, or simply want to understand more, there’s plenty to explore.