The Emotional Toll of Rare Disease Advocacy

2024-06-18

In this episode of "Never Give Up: A Rare Disease Podcast," I delve into the often-overlooked emotional toll of rare disease advocacy. Drawing from my extensive experience as both a rare disease advocate and a professional storyteller, I share personal reflections on the mental health challenges we face as advocates. Advocacy, whether public or private, involves sharing our stories and connecting with others. I recount poignant moments, including a heartbreaking encounter with the grandmother of a...

In this episode of "Never Give Up: A Rare Disease Podcast," I delve into the often-overlooked emotional toll of rare disease advocacy.

Drawing from my extensive experience as both a rare disease advocate and a professional storyteller, I share personal reflections on the mental health challenges we face as advocates. Advocacy, whether public or private, involves sharing our stories and connecting with others.

I recount poignant moments, including a heartbreaking encounter with the grandmother of a young person with PKU, illustrating the profound impact of advocacy on our emotional well-being. Join me as I explore the balance between advocating for others and managing personal health, and discover how we can navigate the emotional weight of our work.

Transcript Available

A transcript of this episode is available on my blog.

About Never Give Up: A Rare Disease Podcast

This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… 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

Email: kevinalexander@pkujournal.com

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