About PKU Journal

PKU Journal is a collection of stories and reflections on life from someone living with PKU.

Hello, I’m Kevin Alexander, and I have Phenylketonuria, also known as PKU. It’s a rare genetic disorder that affects how I metabolize protein. I’ve been an advocate for PKU, newborn screening, and rare disease awareness since 2012. My first project was a film called “My PKU Life”, and since then I’ve been traveling around the world speaking about life with this rare disease and producing other media projects about PKU.

Portrait of Kevin Alexander, creator of PKU Journal. He writes about PKU, newborn screening, rare disease, and mental health advocacy.

Kevin Alexander, Creator of PKU Journal, a collection of stories and reflections on life from someone living with PKU.

I’m also a writer.

I’m one of those people who can’t fully process their thoughts until they write them down. So, I’ve kept a daily journal, off and on, since 2004. I have piles of journals stacked on my bookshelf in my home office. Journaling is how I make sense of life.

And that’s why I created this blog. It’s my journal, just in a different form.

If you’re new around here, I’ve got a couple of things you can check out to better understand PKU, my story, and my approach to advocacy:

“My PKU Life”: My First PKU Film

My PKU Life was the beginning of my advocacy journey. I produced it in late 2011, and beginning in early 2012 I began traveling the world, sharing my story and producing other media about PKU.

I keep sharing this story for one reason—to encourage you to share yours. I never imagined that my story would reach as many people as it has. And your story can have a greater impact than you can ever imagine. You don’t have to broadcast it or share it on social media. Even if you just sit down with a friend in a coffee shop and share your experiences, it matters. Because you matter.

A quick note about the organization I serve… I mentioned the National PKU Alliance (NPKUA) at the end of this video. At the time, I had no association with them. But I had heard of them and wanted to direct viewers to a non-profit organization dedicated to our community. Since then, NPKUA has become an invaluable partner in my advocacy. I have traveled across the United States on their behalf, producing videos about PKU and sharing my story.

Wherever you are in the world, find an organization that represents your core values, lock arms with them, and dare to change the world together. NPKUA has been that organization for me, and I am incredibly grateful.

Regaining Hope: My Journey to Rare Disease Advocacy

This is the first episode of Never Give Up: A Rare Disease Podcast. I decided to open up about this story as I embarked on a new advocacy journey: mental health awareness. I don’t encourage everyone to share their mental health journey so openly. But it was something I chose to do so that I could move on from my past. It’s different in tone than anything I had produced for the community before, but it’s a part of my journey that I felt like I needed to share. And it’s true. All of it.

“For Katy”: A Film About Newborn Screening

Newborn screening is a human right. It saves lives. This film, “For Katy” tells the story of a girl born with PKU who did not receive newborn screening at birth. We share the same diagnosis, but have different lives. As long as one child falls through the cracks in the newborn screening system—a system that has saved lives but needs improving—we need to keep fighting, speaking, and showing up for those who need help the most.

About My Journal Entries

I treat this site as an extension of my journal. Sometimes I write about PKU. Sometimes I’m raising awareness of newborn screening. Or I reflect on living with a rare disease. Often I explore life through the lens of mental health.

But why do I do it?

I’m not trying to amass clicks. I’m not trying to increase views on my videos. I’m not trying to boost downloads of my podcast.

I’m not trying to boost “engagement”. Or even spark conversations.

I’m trying to ignite reflections in your heart and mind. Sometimes I share deeply personal stories. Other times I might discuss sensitive issues.

And you might not want to share or talk openly about them. I get that.

But society is screaming at us that we are unbreakable machines who should be on a never-ending adrenaline rush.

And all I’m trying to do is encourage you to slow down, breathe, and think about your life.

If you’d like to connect, my socials and email links are in the sidebar on the right. Feel free to reach out. I’m always up for a good chat.

Thanks for stopping by.

~ Kevin

ABOUT PKU JOURNAL