REFLECTIONS ON PKU, NEWBORN SCREENING, AND LIVING WITH A RARE DISEASE
That’s what PKU Journal is all about.
Hello, I’m Kevin Alexander, and I have Phenylketonuria, also known as PKU. 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.
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
I produced this film in 2011 and it changed my life. It’s an overview of my story, but more importantly, it’s a brief look at what living with PKU is all about.
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
And finally, this is a film I produced in 2013 to raise awareness of newborn screening.
Newborn screening saves lives. It saved mine.
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 Me
PKU, Newborn Screening, & Rare Disease Advocate
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..
