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.
Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Andrea Buxton, HOC’s Clinical Director and Nurse Practitioner, and Jill Larson, HOC’s nutritionist, for a conversation about lifestyle medicine. Together, they discuss how small, sustainable changes can improve overall health and well-being.
The discussion explores the six pillars of lifestyle medicine: nutrition, physical activity, restorative sleep, soci...
Today on Beyond the Bleeds, Heather and John are joined by Dr. Bryan Schwebke from Paramount Physical Therapy. Together, they discuss the philosophy behind Paramount, the importance of movement and long-term wellness, and how HOC’s partnership with Paramount is helping patients approach physical therapy in a new way.
Dr. Schwebke shares the story behind Paramount’s founding and explains how his team works to move beyond a tradit...
Today on Beyond the Bleeds, Heather and John are joined by HOC nurse coordinator Kristin Petrie for a practical conversation about nosebleeds and bleeding disorders. Together, they discuss why nosebleeds happen, how to manage them at home, and when it’s time to seek additional medical support.
Kristin explains why nosebleeds are especially common in patients with bleeding disorders like von Willebrand disease and HHT. She also w...
Today on Beyond the Bleeds, Heather is joined by stand-in co-host Erica for a conversation with Angie Farrar, lead nurse coordinator from our Wausau clinic, about recognizing the early signs of a bleed and why acting early matters.
From joint bleeds and muscle bleeds to injuries that may seem minor at first, Angie shares what patients and families should watch for, including pain, swelling, warmth, tingling sensations, and chang...
In this special episode of Beyond the Bleeds, Heather and John take bleeding disorder awareness beyond the clinic and into the community. From downtown Green Bay to St. Norbert College in De Pere, Wisconsin, they hit the streets to ask everyday people what they know about hemophilia and other bleeding disorders—and the answers might surprise you.
With March recognized as Bleeding Disorder Awareness Month and World Hemophilia Day...
Today on Beyond the Bleeds, we’re joined by Andrea Buxton, nurse practitioner, and Brightyn Handrich, physical therapist, to discuss hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndrome (EDS) and how these conditions can intersect with bleeding symptoms.
EDS and HSD are connective tissue disorders that affect the body’s collagen, which provides structure and support for joints, blood vessels, skin, and other tissues....
Today on Beyond the Bleeds, we’re again joined by Kathleen Gerus-Darbison, sociology professor and founder of the Stitches Doll Project, as John and Heather continue their conversation about the impact of storytelling, creative expression, and community.
Kathleen shares how the Stitches Doll Project grew beyond its original focus on women living with HIV to include women and girls with bleeding disorders, survivors of violence, ...
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 navigatin...
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 w...
In this episode of Beyond the Bleeds, John and Heather talk with Matthew Barkdull, a Clinical Supervisor at The Center for Change, about the history of hemophilia.
Matthew talks about how he learned more about hemophilia after being diagnosed with a severe form of the condition. He shares stories from journals written by his grandfather in the 1940s. These journals show what life with hemophilia was like before today’s treatment...
In this episode of Beyond the Bleeds, we talk with Donna Varney and her daughter, Maria Bularz, about navigating emotions after a bleeding disorder diagnosis. They share their experiences as a parent, sibling, and mother raising children with hemophilia.
Donna talks about learning that her 2-month old son had severe hemophilia B in 1979. At that time, treatment options were limited. She had never heard of hemophilia before the d...
Today on Beyond the Bleeds, we sit down with Sumedha Ghate, a genetic counselor at HOC, and Andrea Buxton, HOC’s nurse practitioner and clinical director, to break down some of the most common misconceptions about bleeding disorders. From the belief that someone with hemophilia could bleed to death from a paper cut to the idea that women cannot have bleeding disorders, Andrea and Sumedha walk through the myths they encounter most o...
Today on Beyond the Bleeds, we’re again joined by Andrea Buxton and Kristy Schiffer for part two of this heartfelt exploration of family life with a child facing an inhibitor diagnosis. Together, we dive deep into the emotional and practical realities of daily infusions, coping with medical routines, and the unwavering strength required to navigate uncertainty—especially when medical needs so impact childhood and parenting. From th...
Today on Beyond the Bleeds, we sit down with Andrea Buxton and Kristy Schiffer to explore the world of inhibitors in bleeding disorders. We unravel what inhibitors are, why they develop, who’s most at risk, and the profound impact these immune system complications have on treatment, families, and daily life. Our guests share not just the science but the real-world journey, filled with challenges, advocacy, and breakthroughs in care...
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...
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...
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.
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...
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...
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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