Beyond the Bleeds

Hemophilia Outreach Center
  • 5.0 (6)
  • MEDICINE
  • UPDATED BIWEEKLY

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.

  1. Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2

    FEB 16

    Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2

    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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer 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. The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2 appeared first on Hemophilia Outreach Center.

    39 min
  2. Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I

    FEB 2

    Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I

    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 treatments. The group talks about early records of hemophilia from long ago. These records show that families noticed bleeding problems being passed down, even before doctors knew why it happened. Over time, families and doctors learned that hemophilia runs in families. John, Heather, and Matthew also talk about events that helped more people learn about hemophilia. They discuss early families in the United States, when the word “hemophilia” was first used, and how royal families in Europe helped bring attention to the condition. This episode shows why the history of hemophilia matters. Learning about the past helps us understand care today. It also honors the strength of families who lived with bleeding disorders before treatments were available. “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 episode of Beyond the Bleeds explores: How hemophilia was understood long ago How families noticed bleeding problems being passed down What old records tell us about life with hemophilia Events that helped more people learn about hemophilia Why knowing the past helps care today 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer 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. The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I appeared first on Hemophilia Outreach Center.

    33 min
  3. Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz

    JAN 19

    Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz

    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 diagnosis. She shares how scared and overwhelmed she felt in those early days. Over time, learning more and getting support from her family and a hemophilia treatment center helped her feel more prepared and supported. Maria shares her own experience. She grew up with a brother who has hemophilia. Later, she became a parent to a son with the condition. Because she already had information and support, her experience felt different from her mother’s. Still, she explains that navigating emotions after a bleeding disorder diagnosis can be hard, especially as children get older and begin managing their own care. Together, Donna and Maria talk about how emotions change over time. They discuss diagnosis, childhood, the teen years, and adulthood. They also talk about the importance of taking care of your own emotional health and asking for help when needed. Their story shows that navigating emotions after a bleeding disorder diagnosis is ongoing, and families do not have to face it alone. “It was very difficult. It was very emotional. I so felt helpless. I felt scared. I had so much fear because I had never heard about hemophilia. So I couldn’t base it on anything.” — Donna Varney This episode of Beyond the Bleeds explores: Emotional reactions after a bleeding disorder diagnosis How fear can change as families learn more Growing up with a sibling who has hemophilia Parenting a child with hemophilia and supporting independence How hemophilia treatment centers help families Why connection and education matter 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer The post Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz appeared first on Hemophilia Outreach Center.

    39 min
  4. Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate

    JAN 5

    Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate

    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 often, why these myths persist, and how accurate information empowers families, improves treatment, and supports better outcomes for children and adults living with bleeding conditions. Andrea Buxton serves as the nurse practitioner and clinical director at the Hemophilia Outreach Center (HOC). With her depth of experience treating inherited bleeding disorders, Andrea is known for combining her clinical expertise with an ability to translate complex medical topics into practical advice for families. Her advocacy and leadership have improved protocols and advanced support for patients confronting inhibitors and the evolving treatments in hemophilia care. Sumedha Ghate has been a genetic counselor at HOC since 2011. Her journey into genetics began with a fascination for the field’s blend of science and personal interaction. Through her expertise, Sumedha has helped numerous families understand the hereditary nature of hemophilia and navigate the complexities of genetic health management. She provides clarity, education, and guidance during some of the most important moments in a family’s care journey. “We have so many different types of bleeding disorders that we see in this clinic. Most people call everything that’s a bleeding disorder hemophilia, but it’s not.” ~Andrea Buxton Today on Beyond the Bleeds Why the idea of bleeding to death from something as small as a paper cut has stuck around for so long, and what actually happens in the body when a bleed occurs. What most people misunderstand about females and bleeding disorders, and why factor levels tell a much bigger story than old assumptions ever did. Why so many young girls with heavy periods are overlooked or misdiagnosed, and what research shows about how common undiagnosed bleeding disorders can be. How bleeding disorders can show up for the first time later in life, and why a lack of symptoms early on does not always mean someone is in the clear. Why the assumption that you would know by adulthood if you had a bleeding disorder is often wrong, and how mild cases stay hidden until surgery or another challenge forces a diagnosis. How advancements in treatment and individualized planning allow many patients to pursue sports, movement, and everyday activities with confidence. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer The post Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate appeared first on Hemophilia Outreach Center.

    53 min
  5. Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II

    12/22/2025

    Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II

    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 the chaos of nightly infusions to developing nursing skills on the fly, we open up about growing as parents, partners, and caregivers, and the importance of leaning on support systems when life feels completely out of control. Kristy Schiffer is a devoted mother and passionate advocate for her family. With her vivid storytelling and honesty, she illuminates the challenges and triumphs of raising her son William, who requires regular infusions due to an inhibitor. Andrea Buxton serves as the nurse practitioner and clinical director at the Hemophilia Outreach Center (HOC). With her depth of experience treating inherited bleeding disorders, Andrea is known for combining her clinical expertise with an ability to translate complex medical topics into practical advice for families. Her advocacy and leadership have improved protocols and advanced support for patients confronting inhibitors and the evolving treatments in hemophilia care. “As a parent, you want to think your kid trusts you 100% no matter what … but that’s just not how their brains work.” ~Kristy Schiffer Today on Beyond the Bleeds: Building a nightly routine for infusions is a significant adjustment, often requiring both parents to work together and improvise under pressure. Children adapt remarkably to medical routines, sometimes not remembering life any other way—but for parents, the emotional impact persists. Infusion procedures can be overwhelming, and practicing on dolls is very different from handling a real, squirming child. It’s common for parents to feel powerless or worry their child doesn’t trust them, especially during physically and emotionally challenging moments. Support from family, friends, and coworkers is crucial; grandparents and close contacts often help with logistics and emotional support. Connecting with hemophilia treatment centers (HTCs) provides essential resources, information, and a sense of community that’s invaluable for families. Handling the diagnosis and treatment process is not about mastering everything at once, but facing one moment at a time and letting go of the need for control. It’s okay, and necessary, to rely on others, accept support, and step away when things feel overwhelming. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II appeared first on Hemophilia Outreach Center.

    17 min
  6. Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I

    12/08/2025

    Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I

    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 for children like Kristy’s son navigating severe hemophilia and inhibitors. Andrea Buxton serves as the nurse practitioner and clinical director at the Hemophilia Outreach Center (HOC). With her depth of experience treating inherited bleeding disorders, Andrea is known for combining her clinical expertise with an ability to translate complex medical topics into practical advice for families. Her advocacy and leadership have improved protocols and advanced support for patients confronting inhibitors and the evolving treatments in hemophilia care. “Essentially, when a patient is born with severe hemophilia…their body is not producing a normal level of the clotting protein, Factor VIII or Factor IX.” ~Andrea Buxton Today on Beyond the Bleeds: Inhibitors develop when the body’s immune system responds to infused clotting factor proteins as foreign substances and creates antibodies against them. Severe hemophilia patients are at the highest risk for developing inhibitors, especially those with no naturally occurring Factor VIII or IX. Family history matters, but about 30% of severe hemophilia mutations are spontaneous and undetected until a major bleed occurs. Signs of an inhibitor may include a patient not responding to standard factor treatment and experiencing breakthrough bleeds; regular testing is crucial. Treatment changes drastically in the presence of an inhibitor, often requiring expensive bypassing agents like Novo 7 every two hours. Hemlibra and new rebalancing agents have transformed preventative care but don’t directly treat acute bleeds; bypassing agents remain essential for emergencies. Immune Tolerance Induction (ITI) involves overwhelming the immune system with high daily doses of factor to “teach” the body to accept it, typically requiring a port for infusions. Families often must advocate fiercely for answers, persistence matters, and connecting with specialized centers leads to better outcomes and support. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I appeared first on Hemophilia Outreach Center.

    33 min
  7. Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap

    11/24/2025

    Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap

    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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025 at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please contact Heather at heatherh@hogb.org The post Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap appeared first on Hemophilia Outreach Center.

    25 min
  8. The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich

    11/10/2025

    The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich

    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 and enhance quality of life in this unique community. Dr. Brightyn Handrich is a physical therapist at the Hemophilia Outreach Center in Green Bay, Wisconsin. As a former gymnast with firsthand experience navigating sports injuries, Brightyn made a natural transition into physical therapy, motivated by her passion for exercise and a family history that guided her career path. Her expertise centers on evaluating and treating joint and muscle issues for individuals with bleeding disorders, empowering patients of all ages to maintain mobility and function through evidence-based techniques and movement education. “Your why has to be a lot stronger than your excuses.” ~ Dr. Brightyn Handrich Today on Beyond the Bleeds: Physical therapy is crucial for bleeding disorder patients due to the prevalence of joint issues and pain, which impact daily function, employment, family life, and even mental health. Education is at the heart of physical therapy, helping patients better understand their joint health, injury mechanisms, and preventive strategies. Annual and biannual evaluations allow physical therapists to proactively detect and address minor joint changes before they escalate into major problems. Treatment approaches are highly individualized for pediatric, adult, and older adult patients, reflecting medical advancements and differing levels of joint health. Physical therapists collaborate with hematologists, nursing teams, and families to customize plans that align with sports participation, medication regimens, and patients’ day-to-day activities. Safe movement education and sports guidance empower children with bleeding disorders to participate safely in activities, helping families navigate NVDF’s risk-ranked sports list. In older adults, physical therapy focuses on modifying movement, managing pain, and stabilizing joints, while acknowledging that major joint repair isn’t possible, preservation and adaptation take priority. Barriers to access and adherence include geographic limitations and patient motivation; focusing on the “why” and making education central helps overcome these challenges. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025, at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please get in touch with Heather at heatherh@hogb.org The post The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich appeared first on Hemophilia Outreach Center.

    23 min
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Ratings & Reviews

5
out of 5
6 Ratings

About

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.

Information

  • Creator
    Hemophilia Outreach Center
  • Years Active
    2024 - 2026
  • Episodes
    39
  • Rating
    Clean
  • Copyright
    © Copyright 2026 Beyond the Bleeds
  • Show Website
    Beyond the Bleeds