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In Part 2 of this Beyond the Bleeds series, John and Heather continue their conversation with Matthew Barkdull, Clinical Supervisor at The Center for Change, exploring how hemophilia treatment, advocacy, and awareness have evolved over time.
Matthew shares stories of early treatments, including whole blood transfusions and even experimental approaches like snake venom, highlighting how limited options once were for individuals with bleeding disorders. He reflects on his grandfather’s experience of receiving thousands of transfusions over his lifetime and what that reveals about both desperation and determination in early care.
As Matthew shares, progress often comes through hardship and advocacy:
“Understanding where hemophilia came from helped me understand what my family went through. History gives context to the challenges, the progress, and the resilience of the people who lived it.” — Matthew Barkdull
This conversation highlights how families organized, demanded accountability, and helped change national policy during some of the most difficult chapters in bleeding disorder history.
It also examines ongoing challenges, including insurance barriers, access to factor, global disparities in treatment, and the need for continued research — especially for women and girls with bleeding disorders.
Understanding where we have been helps guide where we need to go next.
This episode of Beyond the Bleeds explores:
- How treatment evolved from whole blood to concentrates and recombinant therapies
- How the AIDS epidemic became a turning point for advocacy and legislation
- The impact of the Ryan White CARE Act and the Ricky Ray Hemophilia Relief Fund
- The long history of misconceptions about women with hemophilia
- Why bleeding severity does not always correlate with factor levels
- The importance of continued research and individualized care
Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?
Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage.
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A Heritage of Courage – A Book Funding Opportunity!
A Heritage of Courage, by Matthew Dean Barkdull, is the first narrative history of hemophilia told through nearly 2,000 years of real human experience. Instead of focusing on medical language, this book centers on people. It shares the stories of families, the strength of the bleeding disorders community, and the scientific breakthroughs that changed lives.
By donating to this project, you are helping preserve an important and often overlooked history for future generations. Your support helps give a voice to a community that has long been misunderstood and underrepresented.
Donations will support the writing, fact-checking, and production of a thoughtfully illustrated book that brings hemophilia’s history to life and honors both the challenges and the progress made over time.
To learn more about this fundraising book project, please contact the author at 385-434-8136 or heritageofcourage@gmail.com.
