International PKU Day, led by E.S.PKU (European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria), a patient-driven umbrella organization representing PKU organizations across Europe, is on June 28. This year’s theme, Shades of PKU, seeks to highlight the diverse experiences of people living with PKU.
The campaign underscores the complex reality of PKU, emphasizing that it’s not just a black-and-white condition but encompasses a broad spectrum of experiences across ages, phases of life, and geographies. Through this initiative, E.S.PKU aims to address the unmet needs of those living with PKU, fostering a deeper understanding and inspiring positive change.
A major aspect of living with PKU is dietary management, which impacts quality of life, from childhood through adulthood. For many, the journey involves navigating the complexities of medical formulas and the social dynamics of food-related gatherings.
Food is deeply embedded in our culture and social interactions. For individuals living with PKU, dietary restrictions can create barriers to fully participating in these shared experiences. In this video, a common desire among those living with PKU is highlighted: diet normalization. The healthcare professionals in the video note that the ability to normalize one’s diet may not only help this community ease their strict dietary restrictions but also enable them to engage in life’s moments without feeling different or isolated.
Watch the video below: