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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
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.
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The post Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate appeared first on Hemophilia Outreach Center.
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:
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.
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The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II appeared first on Hemophilia Outreach Center.
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:
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.
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.
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:
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.
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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 [email protected]
The post The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich appeared first on Hemophilia Outreach Center.
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.
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:
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 [email protected]
The post The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin appeared first on Hemophilia Outreach Center.
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
Guest Contact Information:
Amy WilsonM Health Fairview Center for Bleeding and Clotting DisordersMinneapolis, MN
LinkedInResources Mentioned:
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 [email protected]
The post Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson appeared first on Hemophilia Outreach Center.
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:
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 [email protected]
The post Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray appeared first on Hemophilia Outreach Center.
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:
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 [email protected]
The post Nutritionist Advice for Getting the Most From Vitamins with Jill Larson appeared first on Hemophilia Outreach Center.
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