Beyond the Bleeds

Hemophilia Outreach Center
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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. Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich

    30 MAR

    Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich

    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. When collagen doesn’t function properly, patients may experience joint instability, chronic pain, fatigue, and a wide range of symptoms across multiple body systems. Andrea and Brightyn explain why these disorders can sometimes lead to symptoms similar to bleeding disorders, including bruising, nosebleeds, heavy menstrual bleeding, and prolonged bleeding from injuries. Because connective tissue also supports blood vessels, increased fragility can make bleeding more likely even when traditional clotting tests appear normal. The conversation also explores why these conditions can take years to diagnose. Many patients experience symptoms across multiple systems and are often referred to several specialists before the full picture becomes clear. Through comprehensive care teams that include providers, physical therapists, dietitians, behavioral health specialists, and social workers, patients can receive coordinated support to manage symptoms and improve quality of life. “We can make sure that we’re providing the treatments that you need. There’s certain imaging things that all these patients should have. And having a comprehensive care team like we have helps them with so many of their symptoms.” — Andrea Buxton This episode of Beyond the Bleeds explores: What Ehlers-Danlos syndrome and hypermobility spectrum disorder are How connective tissue disorders affect joints, skin, and blood vessels Why some patients with EDS or HSD experience bleeding symptoms Why these conditions can take years to diagnose The role of physical therapy in strengthening and stabilizing joints How comprehensive care teams help patients manage symptoms 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 | Pandora | Deezer | YouTube The post Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich appeared first on Hemophilia Outreach Center.

    44 min
  2. Healing and Advocacy Through the Stitches Doll Project, Part 2 with Kathleen Gerus-Darbison

    16 MAR

    Healing and Advocacy Through the Stitches Doll Project, Part 2 with Kathleen Gerus-Darbison

    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, and other communities seeking a way to tell their stories. What began as a simple creative activity has evolved into a powerful tool for education, connection, and healing. The conversation explores how the dolls are used in workshops, conferences, and community spaces to help participants express difficult experiences and feel less alone. Kathleen also shares powerful stories from participants and describes the emotional impact people experience when they encounter the dolls and their stories. John and Heather talk with Kathleen about the lasting impact of the project and her hopes for its future. From medical conferences to museums, Kathleen hopes the dolls will continue to educate others and preserve the voices of women and girls whose stories deserve to be remembered. “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: How the Stitches Doll Project expanded into multiple communities The healing power of creative expression Stories from participants who created dolls to share their experiences How exhibits and displays help educate others Kathleen’s hopes for the future of the Stitches Doll Project 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 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. The post Healing and Advocacy Through the Stitches Doll Project, Part 2 with Kathleen Gerus-Darbison appeared first on Hemophilia Outreach Center.

    24 min
  3. Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison

    2 MAR

    Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison

    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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer 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. The post Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison appeared first on Hemophilia Outreach Center.

    32 min
  4. Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2

    16 FEB

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

    2 FEB

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

    19 GEN

    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
  7. Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate

    5 GEN

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

    22/12/2025

    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
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Descrizione

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.

Informazioni

  • Creatore
    Hemophilia Outreach Center
  • Anni di attività
    2024 - 2026
  • Puntate
    42
  • Classificazione
    Contenuti adatti a tutti
  • Copyright
    © Copyright 2026 Beyond the Bleeds
  • Sito web del podcast
    Beyond the Bleeds