Beyond the Bleeds

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.

5/11/26 • 23:36

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.

4/27/26 • 20:11

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.

4/13/26 • 09:58

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.

3/30/26 • 44:22

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.

3/16/26 • 23:59

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.

3/2/26 • 32:08

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.

2/16/26 • 38:36

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.

2/2/26 • 32:48

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.

1/19/26 • 38:35

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.

1/5/26 • 52:34

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.

12/22/25 • 16:35

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.

12/8/25 • 33:12

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. The post Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap appeared first on Hemophilia Outreach Center.

11/24/25 • 25:07

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.

11/10/25 • 23:15

Today on Beyond the Bleeds, Heather and John welcome Perry Parker, professional golfer and passionate advocate for the bleeding disorder community. We dive into Perry’s journey from childhood hemophilia diagnosis […] The post From Bleeds to Birdies with Golf Pro Perry Parker appeared first on Hemophilia Outreach Center.

10/27/25 • 32:07

Today on Beyond the Bleeds, we welcome Xavier Krueger and Kevin Leurquin, two amazing members of the bleeding disorders community in Northeast Wisconsin, for an honest and uplifting conversation about the Hemophilia Outreach Center’s mentorship program. Together, we delve into what it means to connect older teens and adults with younger individuals who are navigating life with hemophilia and other bleeding disorders. We share stories about making lasting friendships, building confidence, and overcoming challenges, all while highlighting the profound impact of these supportive relationships. Xavier Krueger is a vibrant 15-year-old living with severe factor VII deficiency. A passionate singer and theater lover, Xavier has been deeply involved with the hemophilia community from a young age—advocating for others, attending Camp Klotty Pine, and participating in the mentorship program both as a mentee and as a budding future leader. Kevin Leurquin, a fitness enthusiast from Green Bay with mild to moderate hemophilia A, is an advocate and entrepreneur known for his resilience, generosity, and commitment to giving back. Kevin’s life experiences, including conquering personal obstacles and running his own food truck, fuel his dedication to guiding younger members of the community as a mentor. “We can change the narrative of hemophilia and our bleeding disorder by strengthening the community and the conversations we have together.”  ~Kevin Leurquin This Week On Beyond The Bleeds: The Hemophilia Outreach Center’s mentorship program pairs experienced community members with youth for a day of training, conversation, and fun activities. Mentees gain invaluable confidence and learn to communicate about their bleeding disorders in a supportive environment. Mentors find personal fulfillment in sharing their life lessons and seeing mentees grow and thrive. The program fosters genuine connections among people living with rare bleeding disorders, breaking the sense of isolation. Activities like exploring Lambeau Field and completing ropes courses create vibrant settings for learning and bonding. Mentees develop vital social skills, self-advocacy, and leadership abilities that extend beyond the community of individuals with bleeding disorders. Mentors model resilience and honest decision-making, demonstrating that challenges can be turned into strengths. 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 The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin appeared first on Hemophilia Outreach Center.

10/13/25 • 26:37

Today on Beyond the Bleeds, Heather and I welcome Amy Wilson, clinical social worker at the Center for Bleeding and Clotting Disorders at M Health Fairview in Minneapolis, Minnesota. We discuss the prevalence and impact of PTSD in the bleeding disorder community, the unique forms of trauma patients experience, and actionable strategies for providing trauma-informed care. Amy shares insights from her groundbreaking multicenter study, explains how trauma manifests for those with chronic conditions, and emphasizes the essential role of comprehensive support systems. Amy Wilson brings over 20 years of experience as a medical social worker, specializing in critical care, hospice, rare diseases, and, for the past decade, bleeding disorders. She is a published researcher, co-leading a 2023 study on post-traumatic stress disorder and post-traumatic stress symptoms among adults with hemophilia A and B, conducted alongside teams from Mount Sinai Hospital and the Boston Hemophilia Treatment Center. Amy is passionate about integrating mental health advocacy with clinical care, ensuring patients’ emotional and psychological needs are recognized and met. “Trauma isn’t just about what happened, it’s about how you as an individual, your body and mind, react to what happened.” ~Amy Wilson This week on Beyond the Bleeds PTSD and trauma are prevalent in the bleeding disorder community, with 11-14% screening positive, and more than half reported experiencing trauma connected to their condition. Trauma can stem from non-infectious medical events (frequent bleeds, joint damage), chronic pain, psychosocial experiences (bullying and isolation), and infectious complications from prior treatments (HIV, hepatitis). Hospital stays, medical procedures, and negative encounters with providers are significant contributors to PTSD in this population. Trauma doesn’t only present as emotional distress; it can manifest as appointment avoidance, skipping treatments, or even panic when approaching healthcare settings. Signs of PTSD in bleeding disorder patients include intrusion (flashbacks, nightmares), avoidance, negative thoughts and feelings, and hyperarousal (feeling on edge). Younger adults and those with less education face a higher risk for PTSD, especially if they have other medical or mental health conditions. Trauma-informed care, which includes clear communication, informed consent, and a calm provider presence, can significantly enhance patients’ experiences. Social workers play a vital role in assessing emotional needs, providing counseling, crisis intervention, education, and connecting patients to additional support. Guest Contact Information: Amy WilsonM Health Fairview Center for Bleeding and Clotting DisordersMinneapolis, MN LinkedInResources Mentioned: Published study:“Posttraumatic stress disorder and posttraumatic stress symptoms in adults with hemophilia A and B Read the full article here Recommended reading:The Body Keeps Score by Dr. Bessel van der KolkWhat Happened to You? by Dr. Bruce Perry PTSD Checklist for DSM-5 (screening tool)Information on trauma-informed care training. 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 Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson appeared first on Hemophilia Outreach Center.

9/29/25 • 40:02

Today on Beyond the Bleeds, John and I delve into the “One Big Beautiful Bill,” a landmark legislation signed into law on July 4, 2025, and its far-reaching impact on individuals and families living with bleeding disorders. We break down what this trillion-dollar healthcare bill really means—from increased costs and new eligibility rules to the practical next steps for protecting our access to care. An extraordinary advocate and expert joins us to help navigate the changes ahead.  Johanna Gray is a Principal at Artemis Policy Group, a health policy and association management firm in Washington, DC. She works with clients, including patient advocacy groups and associations of specialized treatment centers, to develop and implement successful advocacy strategies involving Congress and federal public health agencies. She has served as a federal policy advisor to the National Bleeding Disorders Foundation since 2007 and the Hemophilia Alliance since 2011. Johanna began her career as an intern for then-Senator Barack Obama and has held several positions in policy analysis and government affairs before founding Artemis with her partners, Ellen Riker and Elizabeth Karan, in 2020. She received an MPA from the Maxwell School at Syracuse University and a B.A. in Public Policy Studies with honors from the University of Chicago. Outside of work, she reads extensively to stay current with two book clubs and enjoys traveling, trying new restaurants, and exploring DC with her husband, Dave, and rescue pup, Frank. “I also think our advocacy with partners made H R1 less bad than it could have been…we have moved mountains before, and we will have to again.” ~Joanna Gray Today on Beyond the Bleeds: The “One Big Beautiful Bill” (HR1) implements approximately $1 trillion in healthcare spending cuts, primarily affecting Medicaid and Marketplace (Obamacare) insurance, which will impact approximately 100 million Americans. An estimated 12 million people could lose coverage due to the combined effects of HR1 and new federal rules, making advocacy and vigilance crucial. Medicaid changes will raise barriers through more frequent eligibility checks, new paperwork requirements, higher out-of-pocket costs, and, in some cases, work requirements. Marketplace (Obamacare) insurance buyers will see higher premiums, more verification hoops, and reduced access to subsidies as ACA tax credits are set to expire in 2025 unless Congress acts. Every state may implement changes differently—if you’re in a Medicaid expansion state, or even if not, always check for updated policies, as many states may adopt cuts voluntarily. Don’t rely on internet searches for insurance—use healthcare.gov for the federal or state-based marketplace and consult HTC social workers for guidance. It’s critical to keep your contact information current and respond quickly to any notices about your coverage to avoid loss due to simple errors or missed deadlines. Grassroots advocacy—sharing personal stories and contacting lawmakers—remains the most powerful tool to protect coverage, as legislators closely tally constituent outreach. Guest Contact Information: Joanna GrayArtemis Policy GroupResources Mentioned:bleeding.quorum.us Wisconsin Department of Health Services – Badger Care Plus National Bleeding Disorders Foundation Action Alerts Healthcare.gov for Marketplace insurance enrollment Hemophilia Alliance-advocacy and resources Community Counts (CDC Data Surveillance) To stay informed and make your voice heard, visit the resources above, connect with your HTC, and remember that every story and every email to Congress truly matters. 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 Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray appeared first on Hemophilia Outreach Center.

9/15/25 • 34:59

Today on Beyond the Bleeds, we’re joined by John and our returning guest Jill Larson, as we dig deep into the often-confusing world of vitamins. We explore what vitamins truly are, why they matter for our health, and how they interact in our bodies like instruments in a symphony. We break down the difference between fat-soluble and water-soluble vitamins, examine whether you really need supplements, and share practical tips for getting nutrients from your diet, especially for those of us in the bleeding disorder community. Jill Larson is our in-house nutritionist at the Hemophilia Outreach Center. She is a nutrition and dietetic technician registered by the Commission in Dietetic Registration, with a bachelor’s degree in nutrition biology and chemistry and a master’s in molecular toxicology. Jill combines scientific rigor with a passion for clear, accessible health education, making her a true asset for anyone seeking to understand nutrition in daily life. “You can’t just isolate one vitamin any more than you could just isolate one single musician all of the time… Then you wouldn’t have much of a symphony.” ~Jill Larson Today on Beyond the Bleeds: Vitamins are essential nutrients the body can’t make (or can’t make enough of), and they support everything from energy production to growth and immune function. Vitamins are categorized as fat-soluble (A, D, E, K) or water-soluble (eight B vitamins and C), and these categories affect how they are stored and excreted. Vitamins work in concert, deficiency in one or taking mega-doses of another can throw off your body’s balance. Most healthy adults can get what they need from a varied diet built around whole, mostly unprocessed foods, supplements are mainly for those with specific needs or deficiencies. Certain groups may require supplements: people with bleeding disorders (e.g., iron), pregnant individuals, those with restricted diets, or specific medical conditions. Supplements can interfere with lab tests and medications; always tell your healthcare provider about any supplements you’re taking. When choosing supplements, look for third-party testing (USP, NSF, Consumer Labs) and avoid “mega-dose” products, more is not better. Simple dietary changes, like increasing fruits, vegetables, beans, lentils, and whole grains, support optimal vitamin intake; consider the Mediterranean diet as a gold standard 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 | DeezerDon’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 Nutritionist Advice for Getting the Most From Vitamins with Jill Larson appeared first on Hemophilia Outreach Center.

9/1/25 • 34:31

Today on Beyond the Bleeds, we sit down with Dr. Jacqueline Stewart, known to her students as Jackie, an Associate Degree Nursing Instructor at Northeast Wisconsin Technical College (NWTC). Together, we delve into the importance of bleeding disorder education in nursing, NWTC’s innovative approach to bridging classroom theory and real-world patient care, and the powerful partnership between NWTC and the Hemophilia Outreach Center. Our conversation highlights how immersive, patient-centered learning is equipping the next generation of nurses to deliver life-saving care and advocacy for those with bleeding disorders. Dr. Jacqueline Stewart is a seasoned nursing educator with a rich clinical background in pediatric hematology and oncology. For a decade, she’s shaped nursing curriculum at NWTC, fostering partnerships to create forward-thinking, hands-on learning experiences for her students. Her leadership has been instrumental in bringing real-world insight to the classroom, from integrating simulation technology to establishing clinical rotations with critical partners like the Hemophilia Outreach Center. “When students see this kind of advocacy in action, it helps them imagine their own potential to make a difference, whether that’s for one patient, one policy, or a community.” ~Dr. Jacqueline Stewart Today on Beyond the Bleeds: NWTC’s nursing program offers multiple pathways, flexible learning options, and innovative tools like augmented and virtual reality labs for hands-on clinical simulations. The partnership with the Hemophilia Outreach Center brings nursing students into direct contact with bleeding disorder patients and multi-disciplinary healthcare teams, deepening their understanding of comprehensive care. Second-year nursing students participate in a course called Clinical Care across the Lifespan, experiencing both hospital-based obstetrics and community clinicals at the HOC. Real-life patient stories and high-impact practices—like interactive case studies and competitive games—make complex bleeding disorder education memorable and applicable. Bleeding disorder education is threaded throughout the curriculum, from basic theory to high-fidelity simulations like postpartum hemorrhage. Students gain practical knowledge of medications, clotting times, and diagnostics, connecting classroom concepts to real-world interventions for both common and rare bleeding conditions. The partnership has inspired personal health advocacy, with some students seeking care after recognizing their symptoms through the Menarche Clinic presentation. Dr. Stewart envisions even more immersive experiences ahead, from virtual reality scenarios to expanded clinic rotations where students witness infusions and multi-disciplinary teamwork in action. Guest Contact Information: Dr. Jacqueline StewartNortheast Wisconsin Technical College Resources Mentioned: Auggie Scholarship for Nursing Students (open to students in select Wisconsin and Michigan counties) University of Wisconsin Green Bay Nursing Program(NWTC/UTWGB 1-2-1-1 partnership) The post Bridging Nursing Gaps with NWTC and Hemophilia Outreach Collaboration with Dr. Jacqueline Stewart appeared first on Hemophilia Outreach Center.

8/18/25 • 20:47

Today on Beyond the Bleeds, we dive into the evolving world of hematology and oncology collaboration and care with Dr. Matthew Ryan and Dr. David Groteluschen from Green Bay Oncology. We discuss the vital importance of specialized, comprehensive care for patients with bleeding disorders, the significance of early intervention, and how partnerships between treatment centers and oncology practices are expanding access and improving outcomes, even in some of the most rural regions. Our conversation goes beyond the clinical to highlight how support staff, research, care coordination, and community outreach shape a patient’s lifelong journey. Dr. Matthew Ryan is the medical director at the Hemophilia Outreach Center and a hematologist-oncologist with Green Bay Oncology. With over 15 years in the field, Dr. Ryan has developed a unique expertise in both oncological and bleeding disorder care, transitioning from his initial background in hematology to become a dedicated leader in adult hemophilia services.Dr. David Groteluschen, also a hematologist-oncologist at Green Bay Oncology, brings 18 years of experience serving diverse communities throughout Wisconsin and Northern Michigan, championing efforts to deliver high-quality, close-to-home care for patients with cancer and blood disorders. “We just want to bring care closer to home—providing access to patients for unique care and comprehensive care at their location.” ~Dr. David Groteluschen Today on Beyond the Bleeds: Comprehensive care at specialized treatment centers like HOC provides benefits that rival or exceed university settings, especially for complex bleeding disorders. Collaboration between hematology/oncology clinics and hemophilia treatment centers is critical for timely, coordinated, and high-quality patient care. There is a dramatic difference in the education and exposure to bleeding disorders between general clinical training and hands-on experience in specialty clinics. Early diagnosis and intervention in children and adults can prevent lifelong complications, especially cumulative joint damage from recurrent bleeds. New treatments, including gene therapy, are transforming the landscape of hemophilia care; however, the field is still in its early stages regarding long-term data. Broader outreach and clinical access, including virtual visits, help reach patients in remote areas who may otherwise go undiagnosed or untreated. Many patients with mild or moderate bleeding disorders, particularly women, are still often underdiagnosed or mistakenly normalize their symptoms due to family history. Financial counseling, nursing coordination, dietitians, and social workers are essential components of the comprehensive care model, helping patients navigate not just medical care, but also life’s logistics and support. Guest Contact Information Green Bay Oncology: https://www.gboncology.comHemophilia Outreach Center: https://hemophiliaoutreach.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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post Bridging Hematology, Oncology, and Hemophilia – Inside the Green Bay Oncology and HOC Partnership with Dr. Ryan & Dr. Groteluschen appeared first on Hemophilia Outreach Center.

8/4/25 • 30:33

Today on Beyond the Bleeds, we sit down with Liz Wollenberg, Chief Systems and Strategy Officer at Feeding America Eastern Wisconsin, and Alison Fiebig, Vice President of Strategy, Brand Marketing, and Communications at Emplify Health. Together, they are founding members and board members of The Monthlies Project, a grassroots initiative dedicated to ending period poverty for school-aged kids in Northeast Wisconsin and beyond. We peel back the stigma around menstruation, discuss the ripple effects of period poverty on education and well-being, and highlight how community-driven solutions are making a difference. Liz Wollenberg is a leader in systems strategy at Feeding America Eastern Wisconsin, combining deep expertise in nonprofit collaboration and advocacy for basic needs. Alison Fiebig brings her background in brand strategy and community engagement to Emplify Health and The Monthlies Project. Both Liz and Alison have championed the movement to address menstrual equity by connecting diverse partners – from food banks to women’s funds – and have been pivotal in building the Monthlies Project’s model for sustainable community support. “We have no staff. It is a community collaboration … people saying, ‘I’m not going to watch this happen in my community any longer.’” ~Alison Fiebig Today on Beyond the Bleeds: The Monthlies Project tackles period poverty by providing free menstrual products to schools and organizations serving youth in Northeast Wisconsin. Period poverty negatively impacts school attendance, mental health, and educational opportunity, especially among those who menstruate. Stigma and misconceptions persist – many are surprised that period poverty exists locally, or assume it’s only a ‘women’s issue.’ The Monthlies Project partners with local nonprofits, school districts, and community organizations, streamlining product distribution through Feeding America Eastern Wisconsin’s logistics network. Their model is volunteer-driven, with no paid staff, funded by private donations, community events, and foundation partnerships. Advocacy is a growing area – systemic change, such as eliminating taxes on period products and requiring free supplies in schools, is necessary for lasting impact. Success is evident in both the number of products delivered (770,000+) and the stories of students who can remain in school thanks to the availability of accessible supplies. The “An Event, Period.” annual fundraiser is a unique, light-hearted evening featuring community stories, comedians, and creative ways to drive awareness and support (next planned for Spring 2026). Guest Contact Information: The Monthlies Project:Website: https://monthliesproject.com/Facebook: https://www.facebook.com/MonthliesProjectLinkedIn: https://www.linkedin.com/company/themonthliesproject/Instagram: https://www.instagram.com/themonthliesproject/ Resources Mentioned: Feeding America Eastern Wisconsin:https://feedingamericawi.org Women’s Fund of the Fox Valley Region:https://www.womensfundfvr.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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post The Monthlies Project: Menstrual Health Advocacy with Liz Wollenberg & Alison Fiebig appeared first on Hemophilia Outreach Center.

7/21/25 • 30:53

Today on Beyond the Bleeds, we’re joined by Dr. Bridget Freeman to explore the importance of sleep health—why it’s foundational to our overall well-being, how our sleep patterns evolve throughout a lifetime, and what we can do to optimize sleep for physical, mental, and emotional health. From the science of circadian rhythms to practical fixes for common sleep problems, we break down actionable steps for creating a better night’s rest and why you might never fully “catch up” on missed sleep. Dr. Bridget Freeman is a dedicated pediatric hematologist with extensive experience helping children and their families navigate complex medical needs. Her passion for whole-person wellness extends beyond the clinic, as she brings insight into how sleep, nutrition, and lifestyle interconnect to foster resilience and healing. She’s committed to translating the latest research into strategies anyone can use to rest, recover, and thrive—especially in communities coping with chronic health challenges. “Sleep is one of the foundational qualities that we need to optimize health. So, sleep, exercise, healthy nutrition, and healthy relationships is part of the infrastructure of our physiology.” ~ Dr. Bridget FreemanToday on Beyond the Bleeds: Sleep health is much more than hours in bed—it’s the quality, timing, and consistency of those hours that matter most. Our circadian rhythm, established as early as three to five years old, is guided by both environmental cues (such as light) and our behaviors. Lack of quality sleep impairs immune function, decreasing natural killer cell activity and even reducing the effectiveness of vaccines such as the flu shot. Sleep has a direct impact on memory, emotional regulation, and the expression of genes linked to chronic diseases, including cancer. Stimulants like caffeine can block sleep signals for up to 12 hours—timing these is crucial for healthy sleep onset. Naps (especially under 45 minutes) offer notable benefits for cardiovascular health and mental refreshment. Lifestyle habits—such as diet, screen time, exercise, and even room lighting—play a critical role in how well we fall and stay asleep. Over-the-counter sleep aids, such as sedatives, may sedate, but they don’t promote restorative sleep. Instead, gentle supports like magnesium and melatonin (at safe dosages), as well as establishing a calming bedtime routine, are healthier options. Resources Mentioned: Why We Sleep by Matthew Walker 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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15—plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post Navigating Sleep Challenges from Childhood to Adulthood appeared first on Hemophilia Outreach Center.

7/7/25 • 36:15

Today on Beyond the Bleeds, I’m joined by Chris Bivins, Child Life Specialist, to talk about the essential role Child Life professionals play in pediatric healthcare settings. We explore how Child Life Specialists help children and families navigate the challenges of illness, injury, and hospitalizations—ensuring that kids develop emotionally and socially, even amid medical treatments. We also discuss the powerful tools they utilize, how they collaborate with care teams and families, and what resources are available when a Child Life Specialist isn’t on site. Chris Bivins is a seasoned Child Life Specialist who discovered her passion for working with children and their families in hospitals during her college years. Originally on the path to medical school, Chris was inspired by her work in a hospital playroom to advocate for and support kids’ psychosocial and developmental needs throughout their medical journeys. Her experience spans emergency, ICU, clinics, and community hospitals, guiding families through difficult moments and helping children cope with diagnoses and procedures. “You want to be truthful. You want to build and maintain their trust… giving them options, giving them some amount of control over the things that they can have control over.” ~Chris Bivins Today on Beyond the Bleeds: Child Life Specialists prioritize children’s developmental and psychosocial needs, ensuring medical care doesn’t overshadow emotional growth. Play is central to how Child Life interacts with kids, making medical experiences less intimidating and more understandable. Honest, age-appropriate explanations and preparation for procedures can help reduce fear, promote trust, and empower children. Child Life Specialists support not just patients, but siblings and caregivers, by advocating for safe spaces and clear communication. Collaboration is key: Child Life professionals work closely with nurses, doctors, social workers, therapists, and teachers to tailor support to each family. Providing children with choices during medical procedures helps foster their autonomy and comfort. While Child Life programs are most commonly found in children’s hospitals, resources and referrals can often be accessed through the Association of Child Life Professionals, and some specialists offer private or telehealth services. The field is growing, with Child Life skills and philosophies being used in adult and geriatric care settings as well as traditional pediatric environments. Guest Contact Information: Chris BivinsCenter for Suicide AwarenessCertified Child Life SpecialistsResources Mentioned: • Association of Child Life Professionals• American Academy of Pediatrics Position Paper on Child Life• Edgewood College Child Life Programs• University of Wisconsin–Stevens Point Child Life Certificate 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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15—plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post Inside the World of Child Life Specialists with Chris Bivins appeared first on Hemophilia Outreach Center.

6/23/25 • 44:55

Today on Beyond the Bleeds, we sat down with Andrea Buxton, a nurse practitioner, and Renata Seiler, nurse coordinator, to discuss what happens when patients with bleeding disorders visit the emergency room. Together, we unpacked the unique challenges these patients face, the critical importance of preparedness and advocacy, and the decisive role of coordinated care. This conversation is packed with insights that can help anyone living with a bleeding disorder—or caring for someone who does—feel more empowered and ready for emergencies, whether at home or traveling far from their usual care team. Andrea Buxton is a nurse practitioner specializing in caring for individuals with bleeding disorders. With extensive experience in clinical practice and patient education, Andrea is dedicated to bridging the gap between patient needs and the complexities of the healthcare system. She excels at guiding patients through emergencies, ensuring they are prepared, informed, and supported during ER visits and transitions in care. Renata Seiler is a nurse coordinator with a rich background as an emergency room nurse. She combines her ER expertise with her passion for patient advocacy, making her an invaluable resource for patients managing rare and complex bleeding conditions. Her hands-on approach and commitment to educating patients and healthcare professionals have significantly impacted the quality and coordination of care for the bleeding disorder community. “It doesn’t matter where you travel to, call us here. It doesn’t matter if it’s the middle of the night, the weekend, you call here first.” – Renata Seiler. Today on Beyond the Bleeds: Patients with bleeding disorders often experience delayed or suboptimal care in the ER due to the rarity and lack of specialized staff training. Emergency staff must recognize the urgency and specific treatment needs for bleeding disorders, even if protocols differ from those for the general population. Bringing an updated emergency card and having contact info for your treatment center handy can significantly improve ER experiences. Always bring your factor medication to the ER if you have it, but be aware of hospital policies regarding patient-supplied medication. Medical ID jewelry can be lifesaving if a patient cannot communicate in an emergency. Always call your HTC (Hemophilia Treatment Center) before heading to the ER—even while traveling or on vacation—to allow professionals to coordinate care and ensure ER staff are informed and prepared. Advocacy starts at check-in: let registration and triage nurses know you have a bleeding disorder and require urgent attention. Preemptive travel planning includes knowing hospital locations along your route, bringing extra clothing, and ensuring you understand where specialized care can be accessed. Guest Contact Information: Andrea BuxtonHemophilia Outreach Center (HOC) – Wisconsinhttps://hemophiliaoutreach.org Renata SeilerHemophilia Outreach Center (HOC) – Wisconsinhttps://hemophiliaoutreach.org Resources Mentioned: • Hemophilia Outreach Center (HOC), available 24/7 for patients in need of assistance: https://hemophiliaoutreach.org• Medical emergency cards issued during annual HTC visits• MedicAlert: https://www.medicalert.org• National Hemophilia Foundation treatment center directory for those traveling or relocating: https://www.hemophilia.org/find-treatment-center 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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post How to Prepare for Emergency Room Visits with Bleeding Disorders with Andrea Buxton & Renata Seiler appeared first on Hemophilia Outreach Center.

6/9/25 • 22:21

Today on Beyond the Bleeds, we sit down with Kate Bazinsky and Joe Hoelscher for part two of ‘BD SUMHAC  Advocating for Fair Mental Health and Substance Use Treatment Part II’ and dive deep into the complexities of advocating for fair mental health and substance use treatment for people with bleeding disorders. Together, we break down the obstacles families face in accessing equitable inpatient or residential care, explore how advocacy shapes state and national policy, and share vital resources that empower our community to fight for their rights. Kate Bazinsky is a dedicated advocate, mother, and driving force behind BDSUMHAC. With a deep commitment to health equity, she brings personal perspective and professional expertise to the bleeding disorders community. Kate leads collaborative teams at BDC Map, works with national organizations, and builds momentum on the state level to advance inclusive access to care and challenge discrimination in medical settings. Joe Hoelscher is a seasoned behavioral health specialist with nearly 30 years of experience working across the spectrum of mental health and substance use disorders. Currently at the Hemophilia Outreach Center in Green Bay, Joe brings a deep understanding of the unique intersections between bleeding disorders, chronic pain, and behavioral health. His wide-ranging expertise includes work with both children and adults, and he holds specialized credentials in alcohol and other drug abuse (AODA) treatment. Joe is dedicated to collaborative, holistic care, with a special focus on advocacy for those who often fall through the cracks in our healthcare system. “It’s essential to recognize that our community deserves the same level of access as anyone else. I see it as a health equity issue.” ~Kate Bazinsky Today on Beyond the Bleeds: The National Bleeding Disorder Foundation’s Medical and Scientific Advisory Council affirms that bleeding disorders should not exclude anyone from inpatient or residential mental health or substance use treatment if their condition is well managed. Discriminatory practices—such as requiring people to forgo factor medications or discharging them when they need to infuse—are actively being challenged through advocacy. BDC Map’s dedicated teams provide toolkits and resources for providers, families, and individuals facing barriers to treatment and help educate facilities on appropriate accommodations. National advocacy has led to changes in the American Society for Addiction Medicine’s guidelines, which now specifically protect the rights of people with self-managed bleeding disorders. Federal efforts, including updates to Section 504, have made it illegal for federally funded facilities to deny access purely based on a bleeding disorder diagnosis. State-level advocacy is in progress, with BDC Map working actively in multiple states to assess barriers and educate governmental agencies and treatment facilities. There are ample ways for community members to get involved, from social media ambassadorship to participating in national advocacy events like Washington Days. Ensuring early intervention and open dialogue about mental health and substance use between patients, families, and treatment providers is critical to preventing crises and overcoming stigma. Guest Contact Information: Kate Bazinsky: https://bdsumhac.orgInstagram, Facebook, LinkedIn: find via the BDSUMHAC link tree Resources Mentioned: BDSUMHAC website & toolkits: https://bdsumhac.orgNational Bleeding Disorder Foundation: https://www.hemophilia.orgAmerican Society for Addiction Medicine (ASAM): https://www.asam.orgNational Institute on Drug Abuse (NIDA): https://nida.nih.govNational Institute of Mental Health (NIMH): https://nimh.nih.govNational Bleeding Disorder Foundation’s Washington Days: https://www.hemophilia.org/events/washington-daysBDSUMHAC social media and bi-monthly newsletter: Find links at https://bdsumhac.org/contact 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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15—plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part II with Kate Bazinsky & Joe Hoelscher appeared first on Hemophilia Outreach Center.

5/26/25 • 26:19

Today on Beyond the Bleeds, we’re joined by Kate Bazinsky, chair of the Bleeding Disorder, Substance Use and Mental Health Access Coalition (BD SUMHAC), and Joe Hoelscher, a behavioral health specialist at the Hemophilia Outreach Center in Green Bay. Together, we shine a light on the painful and often unseen barriers faced by people with bleeding disorders when they seek inpatient mental health and substance use treatment. We discuss the origins of BD SUMHAC, the deep connections between chronic conditions, mental health, and substance use, and the urgent advocacy work happening to dismantle discrimination and secure equal access to care for the bleeding disorders community. Kate Bazinsky brings a unique blend of lived and professional expertise to her advocacy. As the mother of two children with severe hemophilia and an accomplished health policy consultant with a decade of experience on Capitol Hill, Kate has dedicated her career to driving impactful solutions for multi-stakeholder groups. Passionate about consensus-building and deeply committed to advancing access and equity, Kate now channels her skills and compassion into leading BD SUMHAC’s national and state advocacy work. Joe Hoelscher is a seasoned behavioral health specialist with nearly 30 years of experience working across the spectrum of mental health and substance use disorders. Currently at the Hemophilia Outreach Center in Green Bay, Joe brings a deep understanding of the unique intersections between bleeding disorders, chronic pain, and behavioral health. His wide-ranging expertise includes work with both children and adults, and he holds specialized credentials in alcohol and other drug abuse (AODA) treatment. Joe is dedicated to collaborative, holistic care, with a special focus on advocacy for those who often fall through the cracks in our healthcare system. “What we found was that 83% of hemophilia treatment center providers who had attempted to refer their folks with bleeding disorders to inpatient or residential substance use or mental health treatment facilities had received denials.” – Kate Bazinsky Today on Beyond the Bleeds: The vast majority of treatment denials for the bleeding disorders community are tied to inpatient settings—outpatient access remains relatively better, though limited for all. Top reasons for denial include fear of needles/infusions, medical complexity, and insurance or medication cost issues, sometimes even if the patient doesn’t require active medication. Mental health and substance use disorders are deeply interconnected, and people with bleeding disorders face heightened risk due to chronic pain, anxiety, and opioid prescriptions. Lack of education among inpatient and residential facilities fuels “front door” discrimination, as many refuse to learn what’s required for safe care. National surveys and advocacy have led to significant wins, including updated American Society for Addiction Medicine criteria and strengthened federal anti-discrimination rules (Section 504). Advocacy now occurs at local, state, and national levels, from directly educating facility staff to collaborating with lawmakers and federal agencies. Families, providers, and advocates can access resources, including toolkits, support networks, and public comment and engagement opportunities. The bleeding disorders community is encouraged to speak openly about mental health, access treatment early, and rally for policy change, because advocacy and education are for everyone. Guest Contact Information: Kate Bazinsky & BD SUMHAC: https://bdsumhac.orgSign up for the newsletter, explore resources, or join advocacy initiatives and the Social Media Ambassador program. Resources Mentioned: BD SUMHAC Provider & Access Toolkits: https://bdsumhac.org/resources/ Social Media Ambassadors (sign up via BD SUMHAC site) National Institute on Drug Abuse (NIDA): https://nida.nih.gov National Institute of Mental Health (NIMH): https://nimh.nih.gov National Bleeding Disorders Foundation (NBDF) – Washington Days Advocacy: https://www.hemophilia.org/events/washington-days Hemophilia Federation of America: https://www.hemophiliafed.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 Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities! Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment. HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it. Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606 The post BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part I with Kate Bazinsky & Joe Hoelscher appeared first on Hemophilia Outreach Center.

5/12/25 • 28:25

Today on Beyond the Bleeds, John and Heather welcome Sumedha Ghate, a genetic counselor at HOC in Green Bay, Wisconsin. Sumedha delves into the intricate world of genetic counseling, discussing the nuances of determining hereditary patterns in hemophilia and other bleeding disorders. The conversation helps demystify genetic testing and its role in diagnosing and managing bleeding disorders, aiming to empower individuals with knowledge about their health and family history. Sumedha Ghate has been a genetic counselor at HOC since 2011. Her journey into genetics started with a fascination with the field’s perfect 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. “Knowing somebody’s carrier status can be very important for their own medical management.” – Sumedha Ghate Today on Beyond the Bleeds: Genetic counseling combines science with patient and family care, which is vital for diagnosing hereditary disorders. Understanding carrier status is crucial for individual medical and future family planning. Hemophilia is inherited in an X-linked manner, affecting males and females differently. Hemophilia can be inherited or de novo (spontaneous mutation), impacting future generations. Acquired hemophilia is not hereditary, often occurring due to other health conditions. Genetic testing should be done through medically approved laboratories for accurate results. Misconceptions like genetic conditions skipping generations are debunked through genetic counseling. Different bleeding disorders require specific diagnostic approaches; there is no one-size-fits-all method. 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 Ready for a weekend of connection, education, and fun? Join the Great Lakes Hemophilia Foundation’s Wisconsin Bleeding Disorders Conference from June 6-8 at the Kalahari Resort in Wisconsin Dells! This event is packed with expert-led sessions covering mental health, aging with bleeding disorders, nutrition, advocacy, and cutting-edge treatments. Plus, there’s something for the whole family—peer-to-peer discussions, youth programs (ages 7-13), and childcare services (ages 4-6). Registration includes two nights at the Kalahari Resort, meals, and full access to the resort’s incredible waterpark. Don’t miss out—register by May 1! Visit glhf.org today to secure your spot and find out about available financial assistance. We can’t wait to see you there! The post The Science and People Behind Genetic Counseling in Hemophilia with Sumedha Ghate appeared first on Hemophilia Outreach Center.

4/28/25 • 31:37

Today on Beyond the Bleeds, Heather and John welcome Karin Koppen and Kailee Frederick from the Great Lakes Hemophilia Foundation to discuss their incredible work and programs serving the bleeding disorders community. Karin and Kailee share insights into the distinctive roles of local chapters in providing education, support, and advocacy while working closely with hemophilia treatment centers to ensure comprehensive patient care. Karin Koppen joins us as the Director of Camp and Community Outreach at Great Lakes Hemophilia Foundation, where she has dedicated the past 18 years to supporting individuals with bleeding disorders. With her extensive experience in nonprofits and a personal understanding of life with a chronic disease, Karin is passionate about creating inclusive environments where people can thrive. Kailee Frederick, the Education and Programs Coordinator, has been with the foundation since 2016 and brings her camp leadership background to enhance programs like Camp Klotty Pine. Together, they foster impactful programs, enriching the lives of those in the bleeding disorders community. “Creating supportive and inclusive environments for people to grow isat the heart of what we do.” ~Karin Koppen Today on Beyond the Bleeds: Great Lakes Hemophilia Foundation (GLHF) supports patients across Wisconsin with non-medical services such as education, advocacy, and financial assistance. Local chapters like GLHF collaborate with hemophilia treatment centers (HTCs) to provide comprehensive care, balancing medical and non-medical needs. The Wisconsin Bleeding Disorders Conference is an annual event bringing families together for education and connection. Camp Klotty Pine offers a transformative summer camp experience for kids with bleeding disorders, focusing on empowerment and community. Advocacy efforts at GLHF help ensure access to care and legislative awareness at both state and national levels. GLHF provides scholarships and financial assistance programs to support educational and emergency financial needs. Fundraising events like the Unite Walk and Best Bloody Series are crucial for sustaining programs and fostering community engagement. Getting involved with GLHF’s programs and advocacy initiatives can lead to powerful community connections and personal growth. Guest Contact Information: Great Lakes Hemophilia Foundation:https://www.glhf.org/ Resources Mentioned: Wisconsin Bleeding Disorders Conference Registration:https://www.glhf.org/events Unite Walk:https://www.glhf.org/unite-walk Best Bloody Series:https://www.glhf.org/best-bloody Advocacy Information:https://www.glhf.org/advocacy Camp Klotty Pine Details:https://www.glhf.org/camp Events Calendar:https://glhf.org/events-calendar/ Camp Page:https://glhf.org/what-we-do/camp/ Open house Registration:Kkoppen@glhf.org Great Lakes Hemophilia Foundation Homepage – Great Lakes Hemophilia Foundation Great Lakes Hemophilia FoundationCamp – Great Lakes Hemophilia Foundation Facing Fears and Finding Friendship at Camp Klotty Pine with Alyssa, Eliot, and Elias Myrie 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 Join the Celebration! The Hemophilia Outreach Center invites you to a special Open House event! When: March 26th, 5:00 – 7:00 PM Where: Expanded Green Bay Clinic, 2060 Bellevue Street What’s in store?                   •   Hear from our CEO at 6:00 PM about our exciting strides forward.                   •    Tour our new, state-of-the-art facilities.                   •     Enjoy delicious hors d’oeuvres and a captivating historical slideshow. This event is open to everyone—we can’t wait to celebrate with you! Don’t forget to RSVP at hemophiliaoutreach.org to claim your exclusive HOC gift. Let’s grow together—see you there! The post Exploring Hemophilia from Camp Klotty Pine to Advocacy with Great Lakes Hemophilia Foundation appeared first on Hemophilia Outreach Center.

4/14/25 • 34:46

Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support. Erin Wegner is a mother of two boys, Levi and Everett, both diagnosed with hemophilia. With no previous family history, Erin was thrust into the bleeding disorders community after a challenging situation arose shortly after Levi’s birth. From Nebraska to Wisconsin, Erin’s story is about adapting to the unexpected and creating a support network for families facing similar situations. “When Levi was born, everything was fine until he was circumcised, and he wouldn’t stop bleeding. That’s when we realized something was wrong.” ~Erin Wegner Today on Beyond the Bleeds: When Levi was born, a routine circumcision revealed his severe hemophilia, sending Erin and her family on an urgent medical quest. Erin’s husband, Josh, played a crucial role in advocating for further investigation, preventing a premature discharge from the hospital. Angie Farrar highlights the critical role of the Hemophilia Outreach Center in coordinating medical care and providing educational resources. The Wegner family moved from Nebraska to Wisconsin because they needed closer access to medical facilities and specialized care. With Everett’s birth, Erin experienced a more coordinated approach, backed by genetic testing and a clear birth plan. As a lead nurse coordinator, Angie Farrar ensured seamless communication and preparations between healthcare providers for Erin’s deliveries. Community support through the Wausau Hemophilia Outreach Center gave Erin access to essential networks and resources. Erin now serves as a patient liaison, supporting families and advocating for awareness in the bleeding disorders community. 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 Ready for a weekend of connection, education, and fun? Join the Great Lakes Hemophilia Foundation’s Wisconsin Bleeding Disorders Conference from June 6-8 at the Kalahari Resort in Wisconsin Dells! This event is packed with expert-led sessions covering mental health, aging with bleeding disorders, nutrition, advocacy, and cutting-edge treatments. Plus, there’s something for the whole family—peer-to-peer discussions, youth programs (ages 7-13), and childcare services (ages 4-6). Registration includes two nights at the Kalahari Resort, meals, and full access to the resort’s incredible waterpark. Don’t miss out—register by May 1! Visit glhf.org today to secure your spot and find out about available financial assistance. We can’t wait to see you there! The post Hemophilia Journey from Newborn Challenges to Care Coordination with Erin Wegner appeared first on Hemophilia Outreach Center.

3/31/25 • 34:08