For teenagers living with phenylketonuria (PKU), daily life involves far more than school schedules, homework or extracurricular activities.

Living with the metabolic condition that affects how the body processes phenylalanine (Phe), a building block of protein, requires incredibly thoughtful planning and meal prep to adhere to a strict low-protein diet. Young people living with PKU often find themselves dealing with the potential mental, emotional and physical effects of Phe buildup, all while juggling the unique pressures and social dynamics that come with adolescence.

For Connor and Londyn, two young people living with PKU, this lived experience wasn’t something they saw represented online. So, they decided to be part of an effort to help bridge that gap.

Connor and Londyn are co-hosts of a new video podcast series called “Why Do I Pheel This Way?” The three-episode series is focused on real conversations about what it’s like growing up with PKU and elevating the voices of young people living with this metabolic condition.

By sharing their perspectives through a series of open discussions, fun segments and expert interviews, Londyn, age 15, and Connor, age 20, are hopeful that others navigating adolescence with PKU find parallels with their own experiences and are inspired to confront some of the same topics in their daily lives.

“While this condition has been a big part of our lives, we don’t often hear people of our age talking about their experiences of living with PKU,” Connor says.

“So we’re sharing ours,” Londyn adds.

Episode 1: Daily Routines

In the first episode of “Why Do I Pheel This Way?” Connor and Londyn talk about how managing their PKU starts early and lasts all day. Beyond the simple logistics involved with carefully planning meals, supplements and school schedules, Londyn and Connor talk about how decisions they make throughout the day can impact energy, focus and mood.

“One of the fun quirks about having PKU is sometimes you feel like you’re on top of the world,” Connor says. “Sometimes, you feel like you’re about to collapse.”

In reflecting on her own experiences managing mood and daily life with PKU, Londyn noted the struggle of distinguishing typical adolescent challenges from symptoms of the condition.

“I just was in a state of denial having PKU,” Londyn said. “And once you get out of the routine, before you know it, you’re like ‘Oh gosh, I’m feeling incredibly anxious or I’m really frustrated right now. What is it? Is it just adolescence or is it actually just PKU?’”

Joining the two hosts in this episode are Londyn’s mom, Kylie, and Dr. Mina Nguyen-Driver, a clinical psychologist who specializes in working with young people with rare conditions such as PKU. Dr. Nguyen-Driver will be part of a segment in each episode called “3 Phe Questions.”

Follow the Series

Stay tuned for two more episodes – focused on managing PKU across social situations as well as sports and self-care – coming this summer on our website and YouTube channel.

Follow the series on LinkedIn, Instagram, Facebook and the Why Do I Pheel This Way TikTok channel to stay up to date on the latest releases.

To learn more about navigating life with PKU, visit pku.biomarin.com.