Beyond the Bleeds

Today on Beyond the Bleeds, Heather and John are joined by Dr. Bryan Schwebke from Paramount Physical Therapy. Together, they discuss the philosophy behind Paramount, the importance of movement and long-term wellness, and how HOC’s partnership with Paramount is helping patients approach physical therapy in a new way.

Dr. Schwebke shares the story behind Paramount’s founding and explains how his team works to move beyond a traditional “reactive” model of care. Rather than focusing only on injury recovery, Paramount emphasizes long-term movement, education, prevention, and helping patients build confidence in their everyday lives.

The conversation also explores how HOC’s comprehensive care model supports this approach. Patients can connect with physical therapy, behavioral health, nutrition, and other resources all in one place. In addition, Heather, John, and Dr. Schwebke discuss the impact movement can have on physical health, confidence, mental health, and overall quality of life.

Throughout the episode, the group highlights the importance of meeting patients where they are and helping them build sustainable habits over time. They also discuss breaking down barriers to care and helping patients feel empowered to move better and live fuller lives.

“We’re not a physical therapy brand. We’re not a personal training brand. We just happen to use those tools to help people move better and live better lives.” — Dr. Bryan Schwebke

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.

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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

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.

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The post Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie appeared first on Hemophilia Outreach Center.

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

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.

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.

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The post Recognizing the Signs of a Bleed and Knowing When to Act with Angie Farrar appeared first on Hemophilia Outreach Center.

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.

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.

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The post Out On The Town: Bleeding Disorders Awareness Edition appeared first on Hemophilia Outreach Center.

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

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.

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The post Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich appeared first on Hemophilia Outreach Center.

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

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.

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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.

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

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 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.

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.

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.

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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 [email protected].

The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2 appeared first on Hemophilia Outreach Center.

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

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, 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 [email protected].

The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I appeared first on Hemophilia Outreach Center.

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

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.