We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families.

• growing up with a dad with severe hemophilia A 
• invisible symptoms in teen years and surgery complications 
• being told “just a carrier” versus getting a real diagnosis 
• marriage, military life, and finding the right HTC 
• parenting a daughter who is a carrier and a son with severe hemophilia 
• the role of community events, conferences, and social media 
• documenting bruises, bleeds, and periods to advocate for care 
• mental health, exercise, and therapy as caregiver essentials 
• navigating public life with an invisible disease 
• future of treatment, gene therapy, and a hopeful outlook

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Special Thanks to Genentech for sponsoring this episode.

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