Today on Beyond the Bleeds, Iโm 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 hospitalizationsโensuring 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 isnโt on site.
Podcast
Embracing Summer Safely with a Bleeding Disorder
Summer is a time to enjoy sunshine, vacations, and quality moments with friends and family. Itโs a season filled with outdoor adventures, travel, and well-deserved relaxation. But for individuals living with bleeding disorders, summer also brings unique challenges...
How to Prepare for Emergency Room Visits with Bleeding Disorders with Andrea Buxton & Renata Seiler
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 disorderโor caring for someone who doesโfeel more empowered and ready for emergencies, whether at home or traveling far from their usual care team.
BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part II with Kate Bazinsky & Joe Hoelscher
Today on Beyond the Bleeds, we sit down with Kate Bazinsky and Joe Hoelscher for part two of โBD SUMHAC Advocating for Fair Mental Health and Substance Use Treatment Part IIโ 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.
Caring for Mental Health in the Bleeding Disorders Community
Living with a bleeding disorder affects more than just the body. It impacts emotional and psychological well-being, as well. Managing a chronic condition like hemophilia or von Willebrand disease often comes with daily stress, uncertainty, and limitations that can...
BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part I with Kate Bazinsky & Joe Hoelscher
Today on Beyond the Bleeds, weโre 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.
Empowering Choice: Daveโs Story
At Hemophilia Outreach Center, we're committed to more than just medicine โ we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it โ the patients who face each day with courage, the care teams...
The Science and People Behind Genetic Counseling in Hemophilia with Sumedha Ghate
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.
Life After Infusions: Masonโs Story
At Hemophilia Outreach Center, we're committed to more than just medicine โ we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it โ the patients who face each day with courage, the care teams...
Gene Therapy at HOC: Prepared, Professional, Personal
At Hemophilia Outreach Center, we're committed to more than just medicine โ we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it โ the patients who face each day with courage, the care teams...
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