Les Clark, Kurt Sensenbrenner, Eric Peters and I met at the 2014 National PKU Alliance Conference, and quickly became good friends. When I thought about hosting an episode of the podcast focused on adults with PKU, these guys immediately came to mind. In today's episode we discuss what life was like growing up with PKU, how we came to manage our own health care as we became adults, and the importance of always staying on diet.

If you're someone struggling with the diet, or maybe a parent of a teenager who is having a rough time with PKU, please listen to this episode. Anyone struggling with the PKU lifestyle needs encouragement, not condemnation. And I was certainly encouraged myself as I spoke to these guys about the unique life experience we share.

Thanks for listening, and I'll see you next time!

- Email: pkulifepodcast@gmail.com

- Facebook: www.facebook.com/pkulifepodcast

- Instagram: @pkulifepodcast

- Twitter: @pkulifepodcast

 

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January 22, 2019

Meet Mark Edwards

Mark Edwards is an adult living with PKU in Wales. Social media can be a great tool for meeting others in the PKU community. Mark and I met on Facebook years ago, but in 2015 we met in person at the ESPKU Conference in Berlin. Mark and I talk about what life was like for him growing up with PKU, his adventures in PKU advocacy, and tips he has for teens and adults struggling with the PKU lifestyle.

A couple of links mentioned in the show. First, Mark is creator of the Facebook page PKU Awareness UK & Ireland: https://www.facebook.com/pku.awareness.uk/.

And early in the show I mentioned my new role as Vice President of the Board of Directors for the Louisiana Metabolic Disorders Coalition. If you live in Louisiana and would like to join our private Facebook group then please send me a message. My contact info is below. But if you'd also like to follow us on our public Facebook page, here is the link: www.facebook.com/louisianamdc. We are also on Instagram @louisianamdc.

Thanks for listening, and I'll see you next time!

- Email: pkulifepodcast@gmail.com

- Facebook: www.facebook.com/pkulifepodcast

- Instagram: @pkulifepodcast

- Twitter: @pkulifepodcast

 

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January 1, 2019

Meet KC Singletary

KC Singletary is a parent of a teenager with PKU. We met at a clinic visit years ago, and she and her son Will were the very first people I met in the PKU community. I am grateful that she was able to be the first guest on the podcast! In this interview we talk about what life was like when Will was diagnosed, how she manages life with an active and busy teenager, and advice she has for new parents of a child with PKU.

- Email: pkulifepodcast@gmail.com

- Facebook: www.facebook.com/pkulifepodcast

- Instagram: @pkulifepodcast

- Twitter: @pkulifepodcast

See you next time!

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December 18, 2018

The Time We Are Given

The holiday season is here! And here is a bonus episode of the podcast. I originally intended to produce just one episode in December, while I get things set up for next year when I really begin the show. In the next episode I will interview the very first person I met in the PKU community, other than my metabolic team at Tulane Medical University in New Orleans. KC Singletary lives in Texas now, but I met her and her son Will right before I became active in the PKU community. I'll talk with her about what it's like raising an active teenager with PKU, and also advice she gives for new parents of a child with PKU. But for today, here's a meditation I wrote a few years ago around this time of year.

PKU Life Podcast with Kevin Alexander

- Email: pkulifepodcast@gmail.com

- Facebook: www.facebook.com/pkulifepodcast

- Instagram: @pkulifepodcast

- Twitter: @pkulifepodcast

See you next time!

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Happy PKU Awareness Day! This is the first official episode of the PKU Life Podcast with Kevin Alexander! Today I'll share a little bit of my story growing up with Phenylketonuria (PKU), how I got involved in PKU advocacy, and what I envision for the future of this podcast. In January I'll begin releasing two episodes per month, featuring interviews with friends in the PKU community that I've met along the way.

While there are many great practical resources online for living the PKU Lifestyle (info on the NPKUA website, the tools at How Much PHE, etc), I plan to take a storytelling approach to this podcast. I tell stories for a living (I'm a professional videographer and editor). And this is my way of introducing you to people I've met in my journeys. That being said, I want to hear from you! Let me know what or who you'd like to hear on the show!

- Email: pkulifepodcast@gmail.com

- Facebook: www.facebook.com/pkulifepodcast

- Instagram: @pkulifepodcast

- Twitter: @pkulifepodcast

See you next time!

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December 3 is PKU Awareness Day! While preparing for the launch of my podcast I recorded this demo episode as a test for my podcast hosting service. It is an article I wrote a few years ago, encouraging anyone with PKU, or any rare disease for that matter, to share your story!

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