1 小時 16 分鐘
Season 4, Episode 3: PKU - Kevin Alexander 1 of 20 Podcast
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- 健康與體能
Kevin Alexander joins the podcast, a fellow advocate and podcaster in the rare disease space.
PKU (Phenylketonuria) is a rare genetic disorder that inhibits the body's ability to metabolize the amino acid phenylalanine, requiring strict dietary management to prevent cognitive impairment and other serious health complications.
Our paths crossed at Rare Disease Week in Washington D.C. back in 2023, and since then, we've discovered a multitude of shared interests. Both immersed in the world of media and storytelling, Kevin and I are passionate about amplifying the voices within our community. Despite our common ground, our dietary restrictions set us apart—Kevin manages PKU, limiting his protein intake, while I navigate a condition restricting fat consumption.
Yet, our differences only enrich our conversation as we delve into various topics within the rare disease community. From the significance of advocacy to the power of storytelling, we explore the highs and lows of our respective conditions. Join us as we bridge our unique perspectives, united in our shared mission.
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Support this podcast: https://podcasters.spotify.com/pod/show/1of20podcast/support
Kevin Alexander joins the podcast, a fellow advocate and podcaster in the rare disease space.
PKU (Phenylketonuria) is a rare genetic disorder that inhibits the body's ability to metabolize the amino acid phenylalanine, requiring strict dietary management to prevent cognitive impairment and other serious health complications.
Our paths crossed at Rare Disease Week in Washington D.C. back in 2023, and since then, we've discovered a multitude of shared interests. Both immersed in the world of media and storytelling, Kevin and I are passionate about amplifying the voices within our community. Despite our common ground, our dietary restrictions set us apart—Kevin manages PKU, limiting his protein intake, while I navigate a condition restricting fat consumption.
Yet, our differences only enrich our conversation as we delve into various topics within the rare disease community. From the significance of advocacy to the power of storytelling, we explore the highs and lows of our respective conditions. Join us as we bridge our unique perspectives, united in our shared mission.
---
Support this podcast: https://podcasters.spotify.com/pod/show/1of20podcast/support
1 小時 16 分鐘