Episode Details

Today on Beyond the Bleeds, we sit down with Stephanie Paap to delve into the lived experience of attending the National Bleeding Disorder Foundation’s annual conference. Together, we journey through the unique considerations of traveling with a bleeding disorder, and the powerful impact of connection, education, and advocacy at a national gathering. We talk honestly about preparing for travel, managing care for a family with Von Willebrand’s disease, and how conferences like NBDF foster hope and community for patients and caregivers alike.

Stephanie Paap is a Green Bay native, long-time member of the Hemophilia Outreach Center, and an active parent-advocate for her two daughters, who are also diagnosed with Von Willebrand’s disease. With deep generational ties to the bleeding disorder community, Stephanie’s perspective is shaped by both personal experience and her commitment to supporting the next generation. Her story highlights the importance of preparedness, advocacy, and the profound reassurance found in connecting with others who truly understand the journey.

“I really encourage you to lean on your community, make use of your resources,
and always keep mental health at the forefront of your journey.” ~Stephanie Paap

Today on Beyond the Bleeds:

• Attending a national conference can provide a powerful sense of community and support, especially for rare disorders like Von Willebrand’s.
• Preparation and advocacy are essential when traveling with bleeding disorder medications, always carry a travel letter and keep supplies close.
• Conference roundtables, particularly disorder-specific ones, offer invaluable peer learning, shared understanding, and mental health support.
• Kids benefit from attending these conferences too, making connections with others their age fosters openness, confidence, and lifelong friendships.
• The progress in treatment options and research brings renewed hope, especially for families managing chronic disorders.
• Knowing local medical facilities, insurance coverage, and preparing for emergencies before travel can ease stress and support safety.
• Conference environments, filled with inclusiveness, openness, and safe spaces, empower attendees to share and listen to each other’s journeys.
• Investing time and energy in educational and community events like NBDF’s conference enriches both patients’ and caregivers’ lives, inspiring advocacy and resilience.

Resources Mentioned:

National Bleeding Disorder Foundation (NBDF):
https://www.hemophilia.org

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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.

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