Beyond the Bleeds

Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie

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 [https://podcasts.apple.com/us/podcast/beyond-the-bleeds/id1766814867] | Spotify [https://open.spotify.com/show/5jdNKKLlU7g6gkfYdn3W2L] | iHeart [https://www.iheart.com/podcast/269-beyond-the-bleeds-212923638/] | Amazon Music [https://music.amazon.com/podcasts/de61094a-a3ea-4837-87ad-2b5a5888f68e/beyond-the-bleeds] | Pandora [https://www.pandora.com/podcast/beyond-the-bleeds/PC:1001092164] | Deezer [https://www.deezer.com/show/1001210951] | YouTube [https://youtube.com/playlist?list=PLCZTmxCF0VOtTZUlmUa-KDxT8yYgIp1Oh&si=cj-qWGLpv_mKQWyA] The post Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie [https://hemophiliaoutreach.org/navigating-nosebleeds/] appeared first on Hemophilia Outreach Center [https://hemophiliaoutreach.org].

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

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 [https://dbdgateway.cdc.gov/HTCDirSearch.aspx] 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 [https://podcasts.apple.com/us/podcast/beyond-the-bleeds/id1766814867] | Spotify [https://open.spotify.com/show/5jdNKKLlU7g6gkfYdn3W2L] | iHeart [https://www.iheart.com/podcast/269-beyond-the-bleeds-212923638/] | Amazon Music [https://music.amazon.com/podcasts/de61094a-a3ea-4837-87ad-2b5a5888f68e/beyond-the-bleeds] | Pandora [https://www.pandora.com/podcast/beyond-the-bleeds/PC:1001092164] | Deezer [https://www.deezer.com/show/1001210951] | YouTube [https://youtube.com/playlist?list=PLCZTmxCF0VOtTZUlmUa-KDxT8yYgIp1Oh&si=cj-qWGLpv_mKQWyA] The post Recognizing the Signs of a Bleed and Knowing When to Act with Angie Farrar [https://hemophiliaoutreach.org/recognizing-the-signs-of-a-bleed/] appeared first on Hemophilia Outreach Center [https://hemophiliaoutreach.org].

Out On The Town: Bleeding Disorders Awareness Edition

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 [https://podcasts.apple.com/us/podcast/beyond-the-bleeds/id1766814867] | Spotify [https://open.spotify.com/show/5jdNKKLlU7g6gkfYdn3W2L] | iHeart [https://www.iheart.com/podcast/269-beyond-the-bleeds-212923638/] | Amazon Music [https://music.amazon.com/podcasts/de61094a-a3ea-4837-87ad-2b5a5888f68e/beyond-the-bleeds] | Pandora [https://www.pandora.com/podcast/beyond-the-bleeds/PC:1001092164] | Deezer [https://www.deezer.com/show/1001210951] | YouTube [https://youtube.com/playlist?list=PLCZTmxCF0VOtTZUlmUa-KDxT8yYgIp1Oh&si=cj-qWGLpv_mKQWyA] The post Out On The Town: Bleeding Disorders Awareness Edition [https://hemophiliaoutreach.org/out-on-the-town-bleeding-disorders-awareness-edition/] appeared first on Hemophilia Outreach Center [https://hemophiliaoutreach.org].

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

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 [https://podcasts.apple.com/us/podcast/beyond-the-bleeds/id1766814867] | Spotify [https://open.spotify.com/show/5jdNKKLlU7g6gkfYdn3W2L] | iHeart [https://www.iheart.com/podcast/269-beyond-the-bleeds-212923638/] | Amazon Music [https://music.amazon.com/podcasts/de61094a-a3ea-4837-87ad-2b5a5888f68e/beyond-the-bleeds] | Pandora [https://www.pandora.com/podcast/beyond-the-bleeds/PC:1001092164] | Deezer [https://www.deezer.com/show/1001210951] | YouTube [https://youtube.com/playlist?list=PLCZTmxCF0VOtTZUlmUa-KDxT8yYgIp1Oh&si=cj-qWGLpv_mKQWyA] The post Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich [https://hemophiliaoutreach.org/living-with-hsd-eds/] appeared first on Hemophilia Outreach Center [https://hemophiliaoutreach.org].

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

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 [https://podcasts.apple.com/us/podcast/beyond-the-bleeds/id1766814867] | Spotify [https://open.spotify.com/show/5jdNKKLlU7g6gkfYdn3W2L] | iHeart [https://www.iheart.com/podcast/269-beyond-the-bleeds-212923638/] | Amazon Music [https://music.amazon.com/podcasts/de61094a-a3ea-4837-87ad-2b5a5888f68e/beyond-the-bleeds] | Stitcher [https://www.stitcher.com/show/1092164] | Pandora [https://www.pandora.com/podcast/beyond-the-bleeds/PC:1001092164] | Deezer [https://www.deezer.com/show/1001210951] ---------------------------------------- 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/ [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 [https://hemophiliaoutreach.org/healing-advocacy-through-stitches-doll-project-part-2/] appeared first on Hemophilia Outreach Center [https://hemophiliaoutreach.org].