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.
gener8.eventsa...
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: pkujournal.com...
Kuvan/Sapropterin: pkujournal.com...
Palynziq: pkujournal.com...
Transition to Adulthood: pkujournal.com...
Returning to Treatment: pkujournal.com...
Pregnancy and PKU: pkujournal.com...
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: pkujournal.com...
Transcript Available
A transcript of this episode is available on my blog (pkujournal.com...) .
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 (pkujournal.com/)
Instagram: @kevinalexander_pku ( / kevinalexander_pku )
Facebook: @pkujournal ( / pkujournal )
Email: [e-mail] (mailto:[e-mail])

[@kyleegarcia5569]

This is hitting me so hard right now. I literally just said to myself, I want to give up right now. I’m so tired, I’m struggling and nobody around me gets it or seems to care. I’m going through my Palynziq trial right now and it’s just a lot in addition to life’s struggles. Thank you thank you thank you for sharing! 🙏🥹

[@kevinalexander_pku]

@@kyleegarcia5569 I’m glad the episode helped. It’s a story I had never shared with the community but wanted to in case it helped someone. So thank you sharing your thoughts with me.

[@kyleegarcia5569]

You’re welcome! I can actually relate to your story as well because I was “the best dietary controlled adult” in my clinic. So once I really started struggling with the diet after my 5th pregnancy, they really pushed me to stay on track and no matter how hard I tried, I just couldn’t. I was dealing with blood sugar problems that were made along the low protein diet. Kuvan helped me a lot for a while, but I still needed to eat more protein to bring my blood sugars back down. Which is why I am now on Palynziq. I met you briefly at the conference in Vancouver, WA a few years back…it’s really nice to connect with you again. Hope you are doing well! 😊

[@kyleegarcia5569]

*Meant to say the blood sugar problems were made worse with the low protein diet.