{"podcast":{"title":"Beyond the Bleeds","slug":"beyond-the-bleeds-7074228","podcast_index_feed_id":7074228,"rss_url":"https://hemophiliaoutreach.org/feed/podcast/","website_url":"https://hemophiliaoutreach.org/","image_url":"https://hemophiliaoutreach.org/wp-content/uploads/2025/04/Album-Art.jpg","author":"Hemophilia Outreach Center","episode_count":50,"summary":"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.","last_synced_at":"2026-07-20T10:20:06.864084+00:00","page_url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228"},"episode":{"title":"Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz","slug":"navigating-emotions-after-a-hemophilia-diagnosis-with-donna-varney-and-maria-bularz","published_at":"2026-01-19T05:00:00+00:00","page_url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228/navigating-emotions-after-a-hemophilia-diagnosis-with-donna-varney-and-maria-bularz","show_page_url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228","url":"https://hemophiliaoutreach.org/navigating-emotions-after-a-hemophilia-diagnosis/","audio_url":"https://media.blubrry.com/3770961/content.blubrry.com/3770961/Navigating_emotions.mp3","summary":"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 This episode of Beyond the Bleeds explores: Emotional reactions after a bleeding disorder diagnosis How fear can change as families learn more Growing up with a sibling w…","meta_description":"In this episode of Beyond the Bleeds, we talk with Donna Varney and her daughter, Maria Bularz, about navigating emotions after a bleeding disorder diagno…","key_points":[],"chapters":[],"topics":[],"duration_seconds":2315,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/beyond-the-bleeds-7074228/episodes/navigating-emotions-after-a-hemophilia-diagnosis-with-donna-varney-and-maria-bularz/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228/navigating-emotions-after-a-hemophilia-diagnosis-with-donna-varney-and-maria-bularz.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}