Navigating Protein Supplements & Low Protein Diet: Patient Insights – Matthew’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.

Matthew Sheridan, Bury

Hi! I’m Matthew and I study History, Politics and Geography at college and I have classical PKU. I love gaming, football, watching movies and spending time with my friends and family.

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

I’ve struggled with taking protein substitute in childhood with some making me sick. I’ve tried a lot of different supplements and after a while I settled on a couple I could tolerate. I have always been taking protein supplement as I think it is vital for the success of managing PKU.

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

Be open to try new protein supplements. Your taste buds can change over time, so something you didn’t like before might surprise you now. It’s just like trying new foods—be adventurous and open to new flavours and combinations. You might find a new favourite!

Question 3 – What protein supplement do you currently take?

XPhe jump Wild Berry.

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

Promin Fresh Bread, Snax, Burger Mix and XPot Chip Shop Curry.

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

You can absolutely live a full, normal life—just like anyone else. There’s so much more awareness around dietary needs these days. PKU doesn’t stop me from enjoying life—I still go out with friends, play the sports I love, and travel abroad. I actually feel proud and unique, and I’m really grateful for all the opportunities I’ve had along the way!