Spending time with friends and feeling a sense of belonging is one of the most important parts of any teen’s life. But, for those living with phenylketonuria (PKU) – a rare metabolic condition where buildup of a part of protein called phenylalanine (Phe) can lead to brain fog, fatigue, mood changes, anxiety and difficulty focusing – adolescence can pose challenges others might not imagine.

In the second episode of “Why Do I Pheel This Way?,” co-hosts Connor and Londyn explore what it’s like maintaining a social life while managing PKU and the additional layer it can add to the everyday social pressures of adolescence and early adulthood. Topics the co-hosts cover include explaining dietary needs to friends, planning ahead for every meal and leaning on the people who help make life with PKU feel less isolating.

Londyn describes the experience as carrying an “invisible backpack” that holds the challenges others cannot always see just by looking at her.

“On the outside, I might be smiling. I might be happy, because I don’t want to bring the mood down,” she says. “Nobody really understands that behind my smile, I could be very tired or not being able to hold a conversation really well.”

Connor relates to that feeling, noting that PKU can affect relationships when friends do not understand why someone may seem tired, distracted or irritable. Both hosts also share how meaningful it can be when friends do understand – whether they explain PKU to others, help find inclusive food options or simply remember what support looks like. For Connor, that support starts close to home. His younger brother also lives with PKU, giving him someone who understands the experience firsthand.

“It doesn’t feel like that big of a thing when you have that person with you who has shared the same experiences,” Connor says.

The two then play a fun PKU edition of “This or That” before Dr. Mina Nguyen-Driver, a clinical psychologist specializing in working with young people living with rare conditions such as PKU, returns to speak with Londyn and Connor about how high Phe levels can impact teens’ moods and cognitive abilities. Dr. Nguyen-Driver also shares the importance of self-advocacy and leaning on the support of friends, family and trusted adults such as teachers and coaches.

“I think advocating for what you know about your health and what you do is so important,” she says. “And then being able to roll that out with other adults, like your teachers, who might not understand what PKU is about.”

For young people navigating PKU, the discussions in episode 2 offer a reminder that social life, friendship and independence are all possible, and that the right support system can help make those experiences feel more inclusive and manageable.

Follow the Series

Continue to follow along as the “Why Do I Pheel This Way?” three-part series comes to a close with a final episode later this month, which will focus on staying active with sports and fitness while living with PKU.  

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.