Beyond the Bleeds

Hemophilia Outreach Center
  • 5.0 (7)
  • 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. The Evolution of Hemophilia Treatment with Dr. Ken Friedman

    1d ago

    The Evolution of Hemophilia Treatment with Dr. Ken Friedman

    Today on Beyond the Bleeds, Heather and John are joined by Dr. Ken Friedman from Versiti Blood Center and HOC for a conversation about the evolution of hemophilia treatment. Drawing on decades of experience in hematology and bleeding disorders care, Dr. Friedman shares how treatment has changed over time and what those advances have meant for patients and families. The discussion begins with the earliest approaches to hemophilia care, when treatment options were extremely limited. Patients often relied on rest, immobilization, blood transfusions, and supportive care while hoping bleeds would resolve on their own. Dr. Friedman explains how the development of cryoprecipitate, plasma-derived factor concentrates, and home infusions dramatically changed what was possible for people living with bleeding disorders. The conversation also examines the challenges the bleeding disorders community faced during the HIV and hepatitis crisis of the 1980s. Dr. Friedman discusses the transition to recombinant factor products, the rise of prophylactic treatment, and how these advances helped reduce bleeding complications. As treatments improved, patients were able to live more active lives and spend less time managing bleeds. Finally, the group looks toward the future of hemophilia care. From gene therapy to non-factor and rebalancing therapies, Dr. Friedman explains how emerging treatments continue to reshape care for people living with bleeding disorders. The episode highlights how far treatment has come and the progress that continues to improve the lives of patients and families. “The initial care of hemophilia was mostly watch and wait and hope that you get better.” — Dr. Ken Friedman This episode of Beyond the Bleeds explores: Early approaches to treating hemophilia and bleeding episodes The development of cryoprecipitate and factor replacement therapies How prophylaxis changed outcomes for patients with hemophilia The impact of recombinant products and improved blood safety Gene therapy and emerging treatment options for the future 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 The Evolution of Hemophilia Treatment with Dr. Ken Friedman appeared first on Hemophilia Outreach Center.

    40 min
  2. Small Changes, Big Impact Through Lifestyle Medicine with Andrea Buxton and Jill Larson

    Jun 8

    Small Changes, Big Impact Through Lifestyle Medicine with Andrea Buxton and Jill Larson

    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, social connection, stress management, and avoiding harmful substances. Andrea and Jill explain how these pillars support overall health. They also discuss why they are important for people living with chronic conditions, including bleeding disorders. Throughout the episode, they share practical ways patients and families can make healthier choices without feeling overwhelmed. Topics include eating more fruits and vegetables, reducing ultra-processed foods, improving sleep habits, increasing movement, and strengthening social connections. The group also highlights how HOC’s comprehensive care model supports lifestyle medicine. Patients have access to nutrition services, physical therapy, behavioral health support, and medical care. Together, these resources help promote long-term health and wellness. The conversation emphasizes that meaningful health improvements do not require drastic changes. Small, achievable goals often lead to lasting success. Taking a short walk, adding an extra serving of vegetables, limiting screen time, or spending more time with others can all make a difference. Over time, those small changes can have a meaningful impact. “You don’t need to conquer all six pillars. If you have something that’s small and realistic, that’s generally more successful.” — Andrea Buxton This episode of Beyond the Bleeds explores: The six pillars of lifestyle medicine How lifestyle medicine supports people with bleeding disorders Practical nutrition and healthy eating strategies The importance of sleep, movement, and social connection Setting realistic goals that support long-term success 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 Small Changes, Big Impact Through Lifestyle Medicine with Andrea Buxton and Jill Larson appeared first on Hemophilia Outreach Center.

    49 min
  3. Movement, Wellness, and the Paramount Partnership with Dr. Bryan Schwebke

    May 25

    Movement, Wellness, and the Paramount Partnership with Dr. Bryan Schwebke

    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 traditional “reactive” model of care. Rather than focusing only on injury recovery, Paramount emphasizes long-term movement, education, prevention, and helping patients build confidence in their everyday lives. The conversation also explores how HOC’s comprehensive care model supports this approach. Patients can connect with physical therapy, behavioral health, nutrition, and other resources all in one place. In addition, Heather, John, and Dr. Schwebke discuss the impact movement can have on physical health, confidence, mental health, and overall quality of life. Throughout the episode, the group highlights the importance of meeting patients where they are and helping them build sustainable habits over time. They also discuss breaking down barriers to care and helping patients feel empowered to move better and live fuller lives. “We’re not a physical therapy brand. We’re not a personal training brand. We just happen to use those tools to help people move better and live better lives.” — Dr. Bryan Schwebke This episode of Beyond the Bleeds explores: HOC’s partnership with Paramount Physical Therapy How physical therapy can support long-term wellness The connection between physical and mental health Breaking down barriers to care and improving access Helping patients build confidence and independence through movement 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 Movement, Wellness, and the Paramount Partnership with Dr. Bryan Schwebke appeared first on Hemophilia Outreach Center.

    34 min
  4. Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie

    May 11

    Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie

    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 walks through the first steps patients and families should take when a nosebleed starts. The conversation covers prevention strategies, treatment options, and environmental factors that can make nosebleeds worse. Heather, John, and Kristin also discuss when patients should contact their HTC or seek emergency care. The episode highlights practical tools and treatment options that may help manage recurring nosebleeds, including humidifiers, saline sprays, antifibrinolytics, DDAVP, and ENT referrals. The group also shares prevention tips for dry weather, seasonal changes, and other environmental triggers. This episode is filled with practical reminders designed to help patients and families feel more prepared and confident when managing nosebleeds at home. “Our main goal is to educate because the more patients know about nosebleeds, the more prepared they are when one actually happens.” — Kristin Petrie This episode of Beyond the Bleeds explores: Why nosebleeds are common in bleeding disorders The first steps to managing a nosebleed at home When to call your HTC or seek medical attention Prevention tips for dry weather and seasonal changes Resources and support available for patients and families 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 Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie appeared first on Hemophilia Outreach Center.

    24 min
  5. Recognizing the Signs of a Bleed and Knowing When to Act with Angie Farrar

    Apr 27

    Recognizing the Signs of a Bleed and Knowing When to Act with Angie Farrar

    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 changes that just don’t feel normal. The conversation also explores why early treatment can help prevent complications and why calling your HTC sooner rather than later is always the best approach. Heather, Erica, and Angie also discuss how bleed symptoms may show up differently in young children, why some symptoms can be easy to overlook, and how patients can become more aware of changes in their bodies over time. This episode is a reminder that when something feels off, trust your instincts and reach out. Early detection can make all the difference. “If it doesn’t feel normal, call us. We’d rather talk through it together than have someone wait too long.” — Angie Farrar This episode of Beyond the Bleeds explores: Early signs and symptoms of a bleed How joint and muscle bleeds may feel different Why early bleed detection matters What parents should watch for in young children When to call your HTC and why “wait and see” can be risky How awareness and education support better outcomes Find an HTC Near You: If you are not connected to a Hemophilia Treatment Center, the CDC’s Hemophilia Treatment Center Directory can help you locate specialized bleeding disorders care near you. Search by state, city, or center name to find an HTC and care team in your area. 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 Recognizing the Signs of a Bleed and Knowing When to Act with Angie Farrar appeared first on Hemophilia Outreach Center.

    20 min
  6. Out On The Town: Bleeding Disorders Awareness Edition

    Apr 13

    Out On The Town: Bleeding Disorders Awareness Edition

    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 approaching on April 17, this episode brings real conversations to the forefront. From common misconceptions to thoughtful responses and a few laughs along the way, it highlights both the gaps in awareness and the importance of continued education. While bleeding disorders impact thousands of individuals and families, there’s still work to be done in helping others truly understand what that means. Episodes like this show how simple conversations can make a big impact. Watch or listen to the full episode to hear real responses, learn more about bleeding disorders, and see how awareness starts with everyday conversations. 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 Out On The Town: Bleeding Disorders Awareness Edition appeared first on Hemophilia Outreach Center.

    10 min
  7. Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich

    Mar 30

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

    Mar 16

    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
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Ratings & Reviews

5
out of 5
7 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
    48
  • Rating
    Clean
  • Copyright
    © Copyright 2026 Beyond the Bleeds
  • Show Website
    Beyond the Bleeds

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