Navigating Protein Supplements & Low Protein Diet: Patient Insights – Kirsty’s Story

Managing phenylketonuria (PKU) is a lifelong commitment that starts in early childhood. From protein substitutes to mastering the low protein (LP) diet, it’s a journey filled with daily decisions, trial and error, and moments of growth.

Managing protein intake is a unique journey, especially for individuals with dietary restrictions. Whether it’s relying on protein substitutes in childhood, experimenting with supplements, or finding joy in low protein meals, each patient has a story to share. Through their experiences, we gain valuable insights into diet management, practical advice and encouragement for others facing similar challenges.

We recently asked several individuals living with PKU to reflect on their experiences. Through their answers, a powerful narrative emerged—one of resilience, self-discovery, and the importance of community. Here’s what they shared in response to five key questions.

Kirsty Thornton, Dudley

I’m almost 43 years old and have been on diet all my life. I live with my dogs and rabbits and have worked as a zoo keeper for over 20 years. Being on diet for life I have seen a lot of changes in the amount of foods and supplements that are available for the PKU community. I have holidayed abroad on many occasions and worked a physical full time job. A PKU can do anything anyone else can do.

Question 1 – What were your memories taking protein substitute when you were a child?

Something I just accepted and took before I ate any meal. Pretty horrid taste but then it would always be very strange if I ate something without having it first. 

Question 2 – What advice would you give to your younger self regarding diet management?

I don’t know really, just keep up what I was doing.

Question 3 – What protein supplement do you currently take?

XPhe jump Wild Berries.

Question 4 – What’s your favourite LP Food product? What is your favourite LP meal?

I like Promin Burger Mix.

Question 5 – What would your advice be to other patients about diet management?

Diet management… don’t deny yourself variety… I only used to have one type of pasta on my prescription list – pasta is pasta? But by having different types allows an important variation in meals which we lack. Spaghetti and burger mix meatballs, macaroni and cheese sauce mix, spirals with ratatouille or even in soup. Different, quick and easy low protein meals to make.