Season 2 Ep. 3 | When I Almost Gave Up

At war with your body and mind… That’s what it feels like to have PKU and struggle with high PHE levels.

This is something I’ve never shared in detail—the years when I struggled with the PKU, low-protein diet. I kept quiet because of fear.

And this episode is the first time I’m telling that story in detail. The episode is called “When I Almost Gave Up”, and I’m sharing it so that maybe you won’t.

Resources

PKUGlobe23

View recordings from a virtual event in 2023 hosted by the Global Association for PKU. It was a three day event featuring presentations from researchers and advocates from around the world. And on the final day of the event, I gave a speech called Owning Your Rare Disease Story, and moderated a panel discussion with adults living with PKU from the US, Australia, England, Ireland, and the Czech Republic.

https://gener8.eventsair.com/pkuglobe23/

 

NPKUA Treatment Series

In 2020 I produced a series of videos for the National PKU Alliance about various treatment options for PKU, as well as coping with treatment during critical years of development. These videos are below, but consult with your clinic to discover what works best for you, and to learn about newer treatment options that might be available.

The Diet: https://pkujournal.com/pku-treatment-series-the-diet/

Kuvan/Sapropterin: https://pkujournal.com/pku-treatment-series-kuvan/

Palynziq: https://pkujournal.com/pku-treatment-series-palynziq/

Transition to Adulthood: https://pkujournal.com/pku-treatment-series-transition-to-adulthood/

Returning to Treatment: https://pkujournal.com/pku-treatment-series-returning-to-treatment/

Pregnancy and PKU: https://pkujournal.com/pku-treatment-series-pregnancy-pku/

 

Owning Your Rare Disease Story

The speech I gave at PKUGlobe23 inspired an episode of this podcast that I released around Rare Disease Day in 2024. Here is a link to that episode on my website: https://pkujournal.com/owning-your-rare-disease-story/

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