PKU advocates carry a hidden mental health burden. I wrote a joint reflection with ESPKU on why the community must talk about supporting those who serve it.
Mental Health of PKU Advocates
PKU has no borders. We are one global community. And we are all in this together.
I wrote that in my journal during my trip to the 2023 ESPKU Conference in Birmingham, UK. As I stood in the back of the room, I looked out and realized that while we were gathered from all across the world, we share a common experience.
It’s an experience that transcends languages, cultures, and borders.
I’ve been going back to ESPKU every year since, and they have become cherished partners in my advocacy work.
Opening remarks at the 2023 ESPKU Conference in Birmingham, UK.
Well, for International PKU Day in 2026, I’m honored to share something I contributed to in collaboration with ESPKU. It’s called “International PKU Day 2026: The Mental Health of Patient Advocates Must Not Be Overlooked.”
I care deeply about the issue of PKU and mental health. It’s something I advocate for because I’ve spoken to so many people in the PKU community and have seen how the burdens of this life can weigh us down. It’s also something I’m concerned about in my personal experience with PKU.
But this article published by ESPKU takes a different angle on the story.
We examine how advocacy can become a burden on PKU advocates.
I’m not reproducing the article here on my site. I encourage you to visit the ESPKU website and read the article there.
It contains insights from PKU advocates around the world. And I was honored to write it with my friend Małgorzata Henek, who serves as Secretary on the ESPKU board.
She is from Poland. I am from the United States. We have each served the PKU community in various ways. But despite living in different parts of the world, we have the same observations…
Advocacy has an effect on the mental health burden of PKU advocates. And we simply must talk about this.
Whatever corner of the world you live in, however you serve the global PKU community, I humbly ask you…
Take time to reflect on how advocacy is affecting your life.
Serving the PKU community is not easy. But the community needs people willing to serve.
And we simply need to talk about all of this more to make sure the people who serve receive the support they need as well.
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