Dare to be Different on PKU Awareness Day

Today is PKU Awareness Day in the US. Normally on this day, I use it as an opportunity to share information and statistics to raise awareness of my rare disease. But today, I'm doing something different.

I'm sharing two stories—one ancient and one modern—that help us accept the beauty in difference. Because, as much as we might like to deny it, our rare disease life sets us apart. We are different than those around us. But that difference can be a source of strength.

A Message About Global Genes

In the episode, I mention an incredible resource for the rare disease community. Many of you might be familiar with Global Genes. But for those who might not be, connecting with Global Genes is a great way to feel part of the larger rare disease community.

The PKU community in particular has a larger population than many other rare disease communities, and in my case, I've often found it tempting to stick within my community, not reach out, and not connect with others in the broader community. But the more I reach out—the more I engage with others who might not share my rare disease—the more I receive hope.

I highly recommend their Facebook group as a place to meet others who are also on this rare disease journey.

Website: GlobalGenes.org

Facebook Group: Global Genes Rare Disease Community

About Never Give Up: A Rare Disease Podcast

This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. 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