A reflection on identity, belonging, and shared experience in the PKU community—and why our common story matters more than ever. The PKU community is a global experience. Geography does not separate or define us.
A Common Story: Shared Experience in the PKU Community
“We share a common story…”
That’s the first line in something I wrote called “Why We Fight: A Manifesto for PKU Awareness”. I shared it at the beginning of PKU Awareness Month in 2025. And now, I’m on a slow journey of reflecting on what it means and sharing those thoughts here on this blog.
So, this article is another installment in this series I’m calling “Why We Fight”. I’m writing it because I have a pattern when it comes to PKU advocacy… I throw myself into the work. I react to problems or challenges as they arise. But I don’t slow down often and ask myself, “Why am I doing this?”
“Why does advocacy matter at all?”
I wrote another article in the series called “Advocacy is Social Justice: We Fight for What is Right”. It was an attempt to take everything I assume about advocacy and lay it aside for a minute, question assumptions, and understand what I believe about it. It was a long, slightly academic article that set a foundation for everything else I’m going to explore in this series.
But this article is a return to my more reflective tone. I’ve shared what I think about advocacy. Now I want to explore the themes of “Why We Fight” and why I feel them deeply.
The PKU Community
There are two distinct periods of my life—when I struggled with PKU in isolation and when I became part of the PKU community.
Some experiences become so foundational to our lives that we forget just how much they influence us.
That’s what the PKU community is to me.
It’s not an idea.
It’s not a target of my advocacy agenda.
It’s an experience.
And it’s an experience that changed my life.
November 23, 2011. That’s the date that changed everything for me. It’s when I released “My PKU Life” on YouTube. I’m not kidding when I say I wondered if anyone would see it. But they did, and shortly thereafter I began connecting with people affected by PKU on social media.
I don’t remember when I first heard the words “PKU community” but this is the period of my life when I encountered it for the first time. Until then, I never would have imagined combining those two words—”PKU” and “community”.
Because my PKU experience until that time was defined by total isolation.
Since then, I’ve traveled the world telling my story and telling other people’s stories. And I’ve experienced community like I’d never imagined.
I recognize that my travels are a privilege that many cannot experience. That’s why I try to do what I can to produce stories from my journeys.
I’m trying to take an experience I’ve been given personally and turn it into something that benefits the entire community.
People have responded to my work, I’m deeply grateful, and I’m just trying to pay it forward.
But there’s something I believe deeply—this sense of community can be experienced even if one is not able to travel to in-person events. It’s something that any of us who are active on social media or involved in organizations intuitively understand.
The PKU community is a global experience. Geography does not separate or define us.
Talking with others affected by PKU has become so routine for many of us that we take it for granted. But it’s not a given…
Children are being born with PKU all the time, and parents reach out on social media soon after their child’s diagnosis.
Others reach out who have lived in total isolation, unconnected to others in the community.
If you browse various PKU groups and chats on social media, you’ll see posts all the time from people experiencing this community for the first time.
But what is it?
What is the PKU community?
Identity and Shared Experience
Any community is defined by a common identity forged through a shared experience.
There are a few definitions of “community” worth considering.
First, it’s “a community of people living in the same place or having a particular characteristic in common.” The PKU community may be scattered across the world, but we do gather together.
Families in the same city share life together.
Regional groups and organizations form to provide support to one another.
We also form national organizations, and volunteers throughout a given country band together to make life better for themselves and each other.
And many of us involved in national organizations also travel internationally to learn and share ideas with our global community.
But there’s another definition that, upon reading this in the Oxford English Dictionary just now, I realize deeply influences my approach to the PKU community. This definition of community is “a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.”
Yes.
The PKU community is both a group of people and a feeling of fellowship.
It is identity and it is experience.
Discovering Our Identity Is A Process
Identity is a paradox.
We discover identity when we look inward and recognize our uniqueness. We consider what makes us different, what sets us apart from others, and we discover who we are that no one else is.
Yet, at the same time, we discover identity when we look outside of ourselves and encounter others. We find people who are like us in some way, feel as if someone finally understands our experiences, and hold on for dear life.
How does this relate to PKU?
Well, I’ll personalize this.
PKU is part of my identity, but it is not my entire identity. Yes, I’ve made it central to my public persona because of my advocacy work. But that is not all that I am.
Still, one of the first things I realized as I was growing up and discovering myself…
Is that I am different from others because of PKU.
It sets me apart.
Growing up, others were jealous when I was allowed to order a special meal at lunch. I often heard, “Why does he get something special, and I don’t?”
Years later I worked in TV news, and I would often stand behind my camera early in the morning—drinking my PKU medical drink from a thermos. Our guests on the morning show could tell I wasn’t drinking coffee, so naturally they had questions. I would take a moment to explain PKU to them. Many were polite, but if they smelled my “formula”, they were less polite.
Even today I struggle with making PKU part of my public identity. In my case, it has become my public identity entirely. I view myself as many things—a storyteller, filmmaker, writer, and advocate. But to many people, I’m “the PKU filmmaker”.
I don’t like being defined as one thing.
I am a person. A complex human being with dreams, desires, fears, and faults.
None of us are one thing and one thing only.
So… I am a complex person and came to this community with a particular background, set of beliefs, and way of seeing the world. This is true for all of us.
When I encountered the PKU community I discovered a new aspect of my identity. As I met others who were like me and felt like people understood me at a level that others couldn’t, my view of relationships changed.
My deepest friendships became defined by a paradox.
People like me in ways others can’t relate.
And people so different than me that their presence in my life changes me and makes me a better human being.
An Experience That Unites Us
What is this shared experience?
In one sense, it’s different for each of us.
We are parents, fighting for our children.
We are children, learning discipline far beyond our years.
We are teenagers, desperate to fit in.
We are adults, finally accepting who we are and discovering others just like us.
We are grandparents, giving our time and finances to create organizations that will leave a legacy for generations.
And everyone surrounding us—our friends, extended family, medical professionals, non-profit organizations, and industry partners—participates in this experience as well, in a different way.
It’s an experience that none of us asked for, but have to figure out how to make the best of it.
It’s more than the low-protein diet.
It’s more than blood tests.
It’s more than clinic visits.
It’s more than insurance battles.
It’s more than social media conversations.
It’s more than clinical trials and new developments in medicine.
It is all of these things. But it is more than all of them combined.
Find Your People
The PKU experience is just a reality shared by everyone in the PKU community across the globe. It’s a diverse experience affecting people from every background and way of life. It’s the reason we can gather at conferences and camps and intuitively understand one another, despite our differences.
It’s an experience based on difference from societal norms and standards. Our lives are unusual. We are different. There is no getting around that. But I firmly believe that it is our difference from everyone around us that makes us special.
Difference is beautiful, because difference changes the world.
The first part of my life, before my PKU advocacy experiences, was based on fear. I was deeply afraid of standing out or feeling different. I did anything I could to minimize the role of PKU in my life.
But since embracing PKU advocacy as my path in life, I have come to see things differently.
I embrace my difference. This experience is just part of who I am. It is not the entirety of my identity, but it is one of the best parts of it.
Because more than anything else…
More than opportunity to speak at events…
More than the videos I’ve produced or stories I’ve told…
More than the campaigns I’ve contributed to…
What I appreciate more than anything else are the people I’ve met in my journey.
The conversations with followers at events…
The friendships I’ve formed along the way…
And especially, those who have become part of my inner circle, who have become family, and whom I confide in.
We all need to find our people in this community. I’ve found mine. And I hope you are able to find yours.
There might be differences in how we live, our treatments for PKU, how we approach advocacy, or the organizations we choose to serve.
But we all serve the same mission.
To live this PKU life the best way we can…
And to make life better for everyone affected by PKU across the globe…
Because ultimately, we are all part of the same experience…
We are defining what it means to live with PKU in the 21st century.
We share a common story.
And it’s one we experience together.
Leave a Reply