Hope Charities

Author: Jonathan James

Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Be a guest on this podcast

Language: en-us

Genres: Health & Fitness, Medicine, Mental Health

Contact email: Get it

Feed URL: Get it

iTunes ID: Get it

Get all podcast data

Listen Now...

More Than a Carrier: How Unexplained Injuries and Surgery Led Me to a Diagnosis - Amanda Gradzewicz
Friday, 31 October, 2025

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 outlookIf you haven't already, make sure that you like and subscribe to our channel so that we can continue to provide more educational content just like this!Special Thanks to Genentech for sponsoring this episode.Support the show