Beyond the Bleeds

Hemophilia Outreach Center · hemophiliaoutreach.org

Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories, and practical advice for managing these conditions. Whether you’re living with a bleeding disorder or supporting someone who is, this podcast offers support, education, and a sense of community. Join us as we explore the challenges, triumphs, and innovations in care. For more resources, visit hemophiliaoutreach.org.

52 episodes

13d ago latest

fortnightly cadence

English language

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Episodes 52

Building Stronger HTCs for Better Patient Care with Angela Blue
13d ago · 31:48
Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Angela Blue, Director of Member & Community Relations with the Hemophilia Alliance, for a conversation about the important work happening behind the scenes to support Hemophilia Treatment Centers (HTCs) and the patients they serve. Angela shares the history and mission of the Hemophilia Alliance and explains how the organization works with HTCs across the country. From group purchasing and 340B pharmacy programs to legal consultation, payer relations, advocacy, and continuing education, the Alliance provides resources th
The College Checklist for Students with Bleeding Disorders with Tricia Delaney
27d ago · 18:27
Today on Beyond the Bleeds, Heather is joined by guest co-host Erica and HOC Nurse Coordinator Tricia Delaney for a timely conversation about preparing for college with a bleeding disorder. Using HOC’s College Prep Checklist as a guide, Tricia shares practical advice to help students confidently transition to campus life while staying on top of their health and treatment. The discussion covers everything from establishing infusion routines and ordering factor independently to connecting with campus health services, disability offices, and your Hemophilia Treatment Center. Tricia also explains
It’s Okay to Not Be Okay: Mental Health and Bleeding Disorders with Robin Lambrecht
1mo ago · 33:38
Today on Beyond the Bleeds, Heather and John are joined by HOC’s Behavioral Health Specialist, Robin Lambrecht, for an important conversation about the connection between mental health and bleeding disorders. Robin shares how behavioral health extends far beyond a mental health diagnosis, offering support for stress, anxiety, emotional well-being, caregiver burnout, and the everyday challenges that can accompany living with a chronic condition. The discussion explores how bleeding disorders can affect emotional health at every stage of life, from childhood through adulthood. Robin explains how
Living Life Beyond Hemophilia B: A Personal Journey with Chris Woller
1mo ago · 29:25
Today on Beyond the Bleeds, Heather and John are joined by HOC’s IT Coordinator, Chris Woller, for a personal conversation about growing up with severe hemophilia B and how treatment has changed over the course of his lifetime. Chris shares his experiences navigating childhood with a bleeding disorder, the challenges of early treatment, and how advances in care have allowed him to live a full and active life. The conversation begins with Chris’s childhood, when treatment options were limited and spontaneous bleeds often meant long plasma infusions, wheelchairs, and missing out on activities ma
The Evolution of Hemophilia Treatment with Dr. Ken Friedman
2mo ago · 39:54
Today on Beyond the Bleeds, Heather and John are joined by Dr. Ken Friedman from Versiti Blood Center and HOC for a conversation about the evolution of hemophilia treatment. Drawing on decades of experience in hematology and bleeding disorders care, Dr. Friedman shares how treatment has changed over time and what those advances have meant for patients and families. The discussion begins with the earliest approaches to hemophilia care, when treatment options were extremely limited. Patients often relied on rest, immobilization, blood transfusions, and supportive care while hoping bleeds would r
Small Changes, Big Impact Through Lifestyle Medicine with Andrea Buxton and Jill Larson
2mo ago · 49:19
Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Andrea Buxton, HOC’s Clinical Director and Nurse Practitioner, and Jill Larson, HOC’s nutritionist, for a conversation about lifestyle medicine. Together, they discuss how small, sustainable changes can improve overall health and well-being. The discussion explores the six pillars of lifestyle medicine: nutrition, physical activity, restorative sleep, social connection, stress management, and avoiding harmful substances. Andrea and Jill explain how these pillars support overall health. They also discuss why they are impo
Movement, Wellness, and the Paramount Partnership with Dr. Bryan Schwebke
3mo ago · 33:55
Today on Beyond the Bleeds, Heather and John are joined by Dr. Bryan Schwebke from Paramount Physical Therapy. Together, they discuss the philosophy behind Paramount, the importance of movement and long-term wellness, and how HOC’s partnership with Paramount is helping patients approach physical therapy in a new way. Dr. Schwebke shares the story behind Paramount’s founding and explains how his team works to move beyond a traditional “reactive” model of care. Rather than focusing only on injury recovery, Paramount emphasizes long-term movement, education, prevention, and helping patients build
Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie
3mo ago · 23:36
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 environmen
Recognizing the Signs of a Bleed and Knowing When to Act with Angie Farrar
4mo ago · 20:11
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 a
Out On The Town: Bleeding Disorders Awareness Edition
4mo ago · 9:58
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
Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich
5mo ago · 44:22
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 […] The post Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich appeared first on Hemophilia Outreach Center.
Healing and Advocacy Through the Stitches Doll Project, Part 2 with Kathleen Gerus-Darbison
5mo ago · 23:59
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 […] The post Healing and Advocacy Through the Stitches Doll Project, Part 2 with Kathleen Gerus-Darbison appeared first on Hemophilia Outreach Center.
Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison
6mo ago · 32:08
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 […] The post Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison appeared first on Hemophilia Outreach Center.
Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2
6mo ago · 38:36
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, […] The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2 appeared first on Hemophilia Outreach Center.
Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I
6mo ago · 32:48
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 […] The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I appeared first on Hemophilia Outreach Center.
Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz
7mo ago · 38:35
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 […] The post Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz appeared first on Hemophilia Outreach Center.
Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate
7mo ago · 52:34
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 post Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate appeared first on Hemophilia Outreach Center.
Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II
8mo ago · 16:35
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 […] The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II appeared first on Hemophilia Outreach Center.
Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I
8mo ago · 33:12
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 […] The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I appeared first on Hemophilia Outreach Center.
Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap
9mo ago · 25:07
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 B
The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich
9mo ago · 23:15
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 […] The post The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich appeared first on Hemophilia Outreach Center.
From Bleeds to Birdies with Golf Pro Perry Parker
10mo ago · 32:07
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.
The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin
10mo ago · 26:37
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. Th
Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson
11mo ago · 40:02
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 […] The post Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson appeared first on Hemophilia Outreach Center.
Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray
11mo ago · 34:59
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 […] The post Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray appeared first on Hemophilia Outreach Center.

Episodes

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Beyond the Bleeds

Episodes 52

Building Stronger HTCs for Better Patient Care with Angela Blue

The College Checklist for Students with Bleeding Disorders with Tricia Delaney

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

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

The Evolution of Hemophilia Treatment with Dr. Ken Friedman

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

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

Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie

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

Out On The Town: Bleeding Disorders Awareness Edition

Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich

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

Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison

Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2

Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I

Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz

Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate

Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II

Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I

Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap

The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich

From Bleeds to Birdies with Golf Pro Perry Parker

The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin

Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson

Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray

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Episodes 52

Building Stronger HTCs for Better Patient Care with Angela Blue

The College Checklist for Students with Bleeding Disorders with Tricia Delaney

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

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

The Evolution of Hemophilia Treatment with Dr. Ken Friedman

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

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

Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie

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

Out On The Town: Bleeding Disorders Awareness Edition

Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich

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

Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison

Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2

Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I

Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz

Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate

Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II

Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I

Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap

The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich

From Bleeds to Birdies with Golf Pro Perry Parker

The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin

Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson

Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray