Beyond the Bleeds

Beyond the Bleeds

Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories, and practical advice for managing these conditions. Whether you’re living with a bleeding disorder or supporting someone who is, this podcast offers support, education, and a sense of community. Join us as we explore the challenges, triumphs, and innovations in care. For more resources, visit hemophiliaoutreach.org.

Episodes

November 24, 2025 25 mins

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 W...

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Today on Beyond the Bleeds, we sit down with Dr. Brightyn Handrich, DPT, to unravel the essential role of physical therapy in the care of patients with bleeding disorders. We examine how physical therapy fits into the comprehensive model at the Hemophilia Outreach Center in Green Bay, explore strategies for injury prevention across different age groups, and discuss how education and tailored interventions can promote joint health a...

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Today on Beyond the Bleeds, Heather and John welcome Perry Parker, professional golfer and passionate advocate for the bleeding disorder community. We dive into Perry’s journey from childhood hemophilia diagnosis […]

The post From Bleeds to Birdies with Golf Pro Perry Parker appeared first on Hemophilia Outreach Center.

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Today on Beyond the Bleeds, we welcome Xavier Krueger and Kevin Leurquin, two amazing members of the bleeding disorders community in Northeast Wisconsin, for an honest and uplifting conversation about the Hemophilia Outreach Center’s mentorship program. Together, we delve into what it means to connect older teens and adults with younger individuals who are navigating life with hemophilia and other bleeding disorders. We share stori...

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Today on Beyond the Bleeds, Heather and I welcome Amy Wilson, clinical social worker at the Center for Bleeding and Clotting Disorders at M Health Fairview in Minneapolis, Minnesota. We discuss the prevalence and impact of PTSD in the bleeding disorder community, the unique forms of trauma patients experience, and actionable strategies for providing trauma-informed care. Amy shares insights from her groundbreaking multicenter study...

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Today on Beyond the Bleeds, John and I delve into the “One Big Beautiful Bill,” a landmark legislation signed into law on July 4, 2025, and its far-reaching impact on individuals and families living with bleeding disorders. We break down what this trillion-dollar healthcare bill really means—from increased costs and new eligibility rules to the practical next steps for protecting our access to care. An extraordinary advocate and ex...

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Today on Beyond the Bleeds, we’re joined by John and our returning guest Jill Larson, as we dig deep into the often-confusing world of vitamins. We explore what vitamins truly are, why they matter for our health, and how they interact in our bodies like instruments in a symphony. We break down the difference between fat-soluble and water-soluble vitamins, examine whether you really need supplements, and share practical tips for get...

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Today on Beyond the Bleeds, we sit down with Dr. Jacqueline Stewart, known to her students as Jackie, an Associate Degree Nursing Instructor at Northeast Wisconsin Technical College (NWTC). Together, we delve into the importance of bleeding disorder education in nursing, NWTC’s innovative approach to bridging classroom theory and real-world patient care, and the powerful partnership between NWTC and the Hemophilia Outreach Center. ...

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Today on Beyond the Bleeds, we dive into the evolving world of hematology and oncology collaboration and care with Dr. Matthew Ryan and Dr. David Groteluschen from Green Bay Oncology. We discuss the vital importance of specialized, comprehensive care for patients with bleeding disorders, the significance of early intervention, and how partnerships between treatment centers and oncology practices are expanding access and improving o...

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Today on Beyond the Bleeds, we sit down with Liz Wollenberg, Chief Systems and Strategy Officer at Feeding America Eastern Wisconsin, and Alison Fiebig, Vice President of Strategy, Brand Marketing, and Communications at Emplify Health. Together, they are founding members and board members of The Monthlies Project, a grassroots initiative dedicated to ending period poverty for school-aged kids in Northeast Wisconsin and beyond. We p...

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Today on Beyond the Bleeds, we’re joined by Dr. Bridget Freeman to explore the importance of sleep health—why it’s foundational to our overall well-being, how our sleep patterns evolve throughout a lifetime, and what we can do to optimize sleep for physical, mental, and emotional health. From the science of circadian rhythms to practical fixes for common sleep problems, we break down actionable steps for creating a better night’s r...

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Today on Beyond the Bleeds, I’m joined by Chris Bivins, Child Life Specialist, to talk about the essential role Child Life professionals play in pediatric healthcare settings. We explore how Child Life Specialists help children and families navigate the challenges of illness, injury, and hospitalizations—ensuring that kids develop emotionally and socially, even amid medical treatments. We also discuss the powerful tools they utiliz...

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Today on Beyond the Bleeds, we sat down with Andrea Buxton, a nurse practitioner, and Renata Seiler, nurse coordinator, to discuss what happens when patients with bleeding disorders visit the emergency room. Together, we unpacked the unique challenges these patients face, the critical importance of preparedness and advocacy, and the decisive role of coordinated care. This conversation is packed with insights that can help anyone li...

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Today on Beyond the Bleeds, we sit down with Kate Bazinsky and Joe Hoelscher for part two of ‘BD SUMHAC  Advocating for Fair Mental Health and Substance Use Treatment Part II’ and dive deep into the complexities of advocating for fair mental health and substance use treatment for people with bleeding disorders. Together, we break down the obstacles families face in accessing equitable inpatient or residential care, explore how advo...

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Today on Beyond the Bleeds, we’re joined by Kate Bazinsky, chair of the Bleeding Disorder, Substance Use and Mental Health Access Coalition (BD SUMHAC), and Joe Hoelscher, a behavioral health specialist at the Hemophilia Outreach Center in Green Bay. Together, we shine a light on the painful and often unseen barriers faced by people with bleeding disorders when they seek inpatient mental health and substance use treatment. We discu...

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Today on Beyond the Bleeds, John and Heather welcome Sumedha Ghate, a genetic counselor at HOC in Green Bay, Wisconsin. Sumedha delves into the intricate world of genetic counseling, discussing the nuances of determining hereditary patterns in hemophilia and other bleeding disorders. The conversation helps demystify genetic testing and its role in diagnosing and managing bleeding disorders, aiming to empower individuals with knowl...

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Today on Beyond the Bleeds, Heather and John welcome Karin Koppen and Kailee Frederick from the Great Lakes Hemophilia Foundation to discuss their incredible work and programs serving the bleeding disorders community. Karin and Kailee share insights into the distinctive roles of local chapters in providing education, support, and advocacy while working closely with hemophilia treatment centers to ensure comprehensive patient care.

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Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support.

Erin Wegner is a mot...

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Today on Beyond the Bleeds is part 2 of our “Reflections on Hemophilia’s Bad Blood Era” with Peggy Maier and Audrey Nuskiewicz, foundational Hemophilia Outreach Center (HOC) nurses. We delve into the challenges faced by the hemophilia community during this period, the impact of HIV/AIDS, and the resilience and hope that emerged in the face of adversity. Peggy and Audrey share their experiences as caregivers, advocates, and pillars ...

Today on Beyond the Bleeds, we’re thrilled to have Peggy Maier and Audrey Nuskiewicz sharing their poignant memories and impactful experiences during the Bad Blood Era. This challenging period in the bleeding disorders community saw contaminated blood products spread diseases like HIV and Hepatitis C. Peggy and Audrey delved deeply into their firsthand experiences as nurses, supporting their patients and community with unwavering d...

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