#BeyondHAE Podcast: A Family’s Journey with HAE

EPISODE · Jun 30, 2025 · 9 MIN

#BeyondHAE Podcast: A Family’s Journey with HAE

from #BeyondHAE Youth Produced Podcast · host US Hereditary Angioedema Association

In this episode of the #BeyondHAE podcast, host Ohm shares a deeply personal perspective on growing up with hereditary angioedema (HAE), first as a witness to his mother’s unexplained medical struggles, and later as someone diagnosed himself. Ohm reflects on how HAE has shaped his childhood, family dynamics, and understanding of what it means to live with a rare and unpredictable condition. From missed birthdays to emergency hospital visits, Ohm opens up about the emotional weight of watching a loved one suffer, the power of preparation, and how his family turned chaos into control. He also discusses the importance of community, advocacy, and hope for future treatments like gene therapy. Whether you’re navigating a new diagnosis or have been living with HAE for years, this episode is a powerful reminder that while HAE brings uncertainty, no one has to face it alone.This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, ⁠⁠⁠www.haea.org⁠⁠⁠.Thank you to our sponsors, ⁠⁠⁠⁠⁠⁠⁠KalVista⁠⁠⁠⁠⁠⁠⁠ and ⁠⁠⁠⁠Pharvaris⁠⁠⁠⁠.

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#BeyondHAE Podcast: A Family’s Journey with HAE

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