Jonathan James sits down with Dr. Akshat Jain to address the community’s questions following news of a serious adverse event in an extended trial of a new therapy, Marstacimab. They discuss Pfizer’s transparency, the careful investigative process ahead, and how patients can approach this information through open dialogue with their physicians. Dr. Jain provides an important clinical perspective and emphasizes shared decision-making when exploring treatment options.

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.

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A candid conversation with Connie Montgomery charts a lifetime of being dismissed, the car accident that unlocked a Factor VII diagnosis, and the fight to secure prophylaxis. We spotlight bias, culture, and the power of narrative medicine to change outcomes for women with bleeding disorders.

• Growing up with unexplained bruising and nosebleeds
• Gullah Geechee cultural privacy and silence
• Repeated dismissal by clinicians and loss of trust
• Heavy menstrual bleeding through two pregnancies
• Diagnosis after an ER doctor listened and consulted
• Phenotype over lab numbers in rare bleeding care
• Securing prophylaxis and navigating insurance barriers
• Building trust and health literacy with care teams
• Organizing patient power and industry accountability
• Compassion that moves beyond empathy into action

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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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