Kevin’s Journal | Entry 4: Finding Your Rare Disease Community

In this episode, you will hear 27 voices of those living with PKU from around the world. We are adults with PKU, parents, spouses... those in some way affected by this rare disease. And we reflect on what can happen in our lives when we find our rare disease community.

Many of us affected by a rare disease live in isolation. That was true for the first 31 years of my life. But when I encountered my rare disease community—the PKU community—my life changed forever.

Recently, I attended the 2023 European Society for PKU and Allied Disorders Treated as Phenylketonuria (ESPKU) Conference in Birmingham, UK. While there I recorded this episode of the podcast. And it is truly an international perspective. I spoke with people from the United Kingdom, Germany, Spain, The Netherlands, Portugal, Ireland, Turkey, Lithuania, North Macedonia, Italy, Austria, the Czech Republic, Croatia, Poland, and the United States.

Although we come from different places in the world, we are one global community. PKU knows no borders.

Sponsorship Message

This experience was made possible by my friends at Ajinomoto Cambrooke. You will hear from one of the founders, Lynn Paolella, in this episode. Apart from her work at Cambrooke, she is first and foremost a PKU mother and advocate.

I wrote an article recently about my experience with Cambrooke products. You can read that article here: Traveling with PKU Formula.

About Never Give Up: A Rare Disease Podcast

This is a storytelling podcast. Normally, I don't interview guests or tell news that affects our community. Other podcasts do that extremely well. I did this time because I couldn't travel across the world and attend such an event without capturing as many perspectives as possible.

I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.

Contact Kevin Alexander

Website: PKUJournal.com

Instagram: @kevinalexander_pku

Facebook: @pkujournal

LinkedIn: Kevin Alexander

Email: kevinalexander@pkujournal.com