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. 1d ago

    It’s Okay to Not Be Okay: Mental Health and Bleeding Disorders with Robin Lambrecht

    Today on Beyond the Bleeds, Heather and John are joined by HOC’s Behavioral Health Specialist, Robin Lambrecht, for an important conversation about the connection between mental health and bleeding disorders. Robin shares how behavioral health extends far beyond a mental health diagnosis, offering support for stress, anxiety, emotional well-being, caregiver burnout, and the everyday challenges that can accompany living with a chronic condition. The discussion explores how bleeding disorders can affect emotional health at every stage of life, from childhood through adulthood. Robin explains how chronic pain, frequent treatments, uncertainty, and social isolation can impact both patients and caregivers, while also highlighting the importance of strong support systems and meaningful community connections. The conversation also addresses the stigma surrounding mental health and why asking for help is a sign of strength, not weakness. Robin offers practical guidance on recognizing when additional support may be needed, what to expect from counseling, and simple strategies families can use to encourage open conversations about emotions and mental wellness. Whether you’re living with a bleeding disorder, caring for a loved one, or simply looking for ways to better support your mental health, this episode offers practical advice and reassurance that no one has to navigate these challenges alone. “It’s okay to not be okay. Asking for help is not a failure. I think it’s a sign of courage.” — Robin Lambrecht This episode of Beyond the Bleeds explores: The connection between mental health and bleeding disorders Recognizing stress, anxiety, and caregiver burnout Building healthy support systems and community connections What to expect when seeking behavioral health support Practical strategies for supporting emotional well-being Support & Resources Looking for additional support? Explore HOC’s Behavioral Health Services, learn about upcoming HOC events and programs, connect with your local Hemophilia Treatment Center, or contact the 988 Suicide & Crisis Lifeline by calling or texting 988 if you or someone you know is experiencing a mental health crisis. 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 It’s Okay to Not Be Okay: Mental Health and Bleeding Disorders with Robin Lambrecht appeared first on Hemophilia Outreach Center.

    It’s Okay to Not Be Okay: Mental Health and Bleeding Disorders with Robin Lambrecht

  2. Jul 6

    Living Life Beyond Hemophilia B: A Personal Journey with Chris Woller

    Today on Beyond the Bleeds, Heather and John are joined by HOC’s IT Coordinator, Chris Woller, for a personal conversation about growing up with severe hemophilia B and how treatment has changed over the course of his lifetime. Chris shares his experiences navigating childhood with a bleeding disorder, the challenges of early treatment, and how advances in care have allowed him to live a full and active life. The conversation begins with Chris’s childhood, when treatment options were limited and spontaneous bleeds often meant long plasma infusions, wheelchairs, and missing out on activities many other children took for granted. He reflects on the emotional impact of growing up with hemophilia, finding confidence through music, and learning to navigate friendships while living with a chronic condition. Chris also shares the story of a life-threatening brain bleed that changed his perspective and ultimately strengthened his connection to the Hemophilia Outreach Center. He discusses how receiving care through a Hemophilia Treatment Center helped guide his treatment and why comprehensive care continues to play such an important role for people living with bleeding disorders. Finally, the group reflects on how dramatically hemophilia treatment has evolved. From fresh frozen plasma and on-demand treatment to prophylaxis and today’s extended half-life therapies, Chris offers a unique perspective as someone who has experienced these advancements firsthand. He closes with encouragement for parents and young people living with bleeding disorders, reminding listeners that while hemophilia is part of who you are, it doesn’t have to define your future. “Your bleeding disorder is a part of who you are… but it doesn’t have to determine who you are.” — Chris Woller This episode of Beyond the Bleeds explores: Growing up with severe hemophilia B Early treatment with fresh frozen plasma and on-demand therapy Surviving a life-threatening brain bleed How hemophilia treatment has evolved over time Advice for parents and individuals living with bleeding disorders 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 Living Life Beyond Hemophilia B: A Personal Journey with Chris Woller appeared first on Hemophilia Outreach Center.

    Living Life Beyond Hemophilia B: A Personal Journey with Chris Woller

  3. Jun 22

    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.

    The Evolution of Hemophilia Treatment with Dr. Ken Friedman

  4. 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.

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

  5. 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.

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

  6. 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.

    Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie

  7. 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.

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

  8. 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.

    Out On The Town: Bleeding Disorders Awareness Edition
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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
    50
  • Rating
    Clean
  • Copyright
    © Copyright 2026 Beyond the Bleeds
  • Show Website
    Beyond the Bleeds

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