About

Life. Mental Health. Rare Disease.

This is what PKU Journal is all about.

Hello, I’m Kevin, and I have Phenylketonuria, also known as PKU. I’ve been an advocate for PKU, newborn screening, and rare disease awareness for over a decade. I started by producing my video “My PKU Life” and have since traveled around the world speaking about life with this rare disease and producing other videos 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.

Initially, I only wrote about my rare disease on this site and how it relates to mental health. But over time, I realized that there are aspects of this rare disease lifestyle that are common to us all.

You may not have PKU or a metabolic disorder, but if you have a rare disease or care for someone who does, you know what it’s like to live with something that will never go away.

It can wear you down. It can affect your mental health.

So that’s what I’m exploring here. How this rare disease lifestyle can weigh on us, burden us, and impact our mental health.

Sometimes I’ll write about PKU. Other times, I’ll reflect on the importance of newborn screening. But often, I plan to write about the rare disease lifestyle in general.

Whatever your role is in the rare disease community, I hope these journal entries prompt you to reflect on your life, your rare disease, and the role of mental health in it all.

Thanks for stopping by.

Kevin