Misdiagnosed for 26 Years: Nandini Pethe on Living with Moderate Hemophilia

For 26 years, Nandini Pethe was misdiagnosed before learning she was living with moderate hemophilia. In this episode, she shares her journey from unexplained bruising in India to discovering factor VIII levels around 3%—and how the right diagnosis, the right team, and the right data changed her life.We discuss:• Early Symptoms and Misdiagnosis as von Willebrand Disease• A Locked Knee at 26 and First Effective Factor Infusions• Severe Joint Damage and Learning Bleed Pain vs. Arthritis Pain• Moving from On-Demand Treatment to Prophylaxis• Raising a Son with Hemophilia• ER Preparation and Advocating with Confidence• Documenting Bleeds with Apps, Photos, and Infusion Logs• Heavy Menstrual Bleeding and Postpartum Hemorrhage as Real Bleeds• Why Women with Hemophilia Are Still Overlooked• The Importance of HTCs, Data Collection, and ResearchHope Charities is committed to advancing education and recognition for women and girls with bleeding disorders. To learn more about our Hope for Her Future initiative and available resources, visit:https://www.hopeforhemophilia.org/hopeforherfuture.htmlThis conversation offers practical tools for women, caregivers, and families navigating bleeding disorders—from documentation habits to stronger advocacy language and long-term joint protection.If you know a woman who has ever been told “it can’t be that,” send her this episode. Follow the podcast and help us continue bringing visibility to women and girls with bleeding disorders.Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. Support the show