In this inspiring video, Mark shares his personal experience of growing up with phenylketonuria (PKU), reflecting on the challenges, lessons and achievements that have shaped his journey.
Mark talks openly about how managing his PKU diet has changed over time, from earlier experiences with low protein foods and protein substitutes to the wider range of options available today. He also shares how recipes from Chef Derek have helped make food feel more enjoyable and adaptable for people living with PKU.
A key part of Mark's story is the importance of routine. He explains how staying organised with his protein substitutes helps reduce stress and supports his day-to-day life, including work and everyday commitments.
Mark also reflects on acceptance, motivation and the moments when living with PKU can feel challenging. He speaks about the value of support from other people with PKU, including the sense of connection that can come from online communities and shared lived experience.
For Mark, running also plays an important role in helping him disconnect from everyday stresses and focus on what he needs to do. His story is a reminder that while living with PKU can bring challenges, having Mark’s support, perseverance and a positive mindset can make a real difference.
"I've got PKU. PKU doesn't have me."
This is a real-life story of resilience, support and taking control while living with PKU.
