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In this episode of Beyond the Bleeds, John and Heather talk with Kathleen Gerus-Darbison, a sociology professor and founder of the Stitches Doll Project, about love, loss, advocacy, and the power of storytelling in the bleeding disorders community.
Kathleen shares her personal journey alongside her late husband, Michael, who had hemophilia and contracted HIV during the blood crisis of the 1980s. She speaks openly about navigating stigma, grief, and raising her daughter while living with HIV. Through unimaginable loss, Kathleen found purpose in education and advocacy.
The conversation highlights the early days of the HIV epidemic, the fear and discrimination families faced, and the strength of women who created support networks when few resources existed.
Kathleen also shares how the Stitches Doll Project began. What started as a simple idea grew into a powerful creative movement where women use handmade dolls to tell their stories. Through art, participants find connection, healing, and a voice.
This episode reminds us that community saves lives. It shows how storytelling, creativity, and courage can turn pain into purpose.
“We needed a way for women to tell their stories. When one woman speaks, it gives others permission to do the same.” — Kathleen Gerus-Darbison
This episode of Beyond the Bleeds explores:
- Living through the HIV crisis within the bleeding disorders community
- The impact of stigma and silence
- Women-led advocacy and support networks
- How the Stitches Doll Project creates healing through art
- Why storytelling builds connection and resilience
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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Learn More About the Stitches Doll Project
The dolls and their poignant stories can be viewed on the Stitches Doll Project website at http://stitchesdollproject.org/. The project continues to provide women and girls a powerful way to share their experiences and educate others through creative expression.
