Talking about the whole experience

Green hand holding a green heart with person representing talking about your whole hemophilia experience

Hemophilia management should no longer be just about preventing bleeds—the entire experience of people living with hemophilia (PwH) deserves to be addressed.

PwH may only talk about the physical aspects of hemophilia management with their healthcare provider. But talking about the emotional, physical, and logistical impacts could help reveal their whole experience.

Having a conversation about the whole experience, including hemophilia truths, may help PwH and their healthcare provider:

  • Understand the unseen impact of hemophilia in daily life
  • Make management plans that meet individual goals
  • Educate themselves and any potential caregivers about hemophilia and management approaches

Talking with healthcare providers about the whole experience can help change the conversation.

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Each patient story reflects the real-life experiences of individuals diagnosed with hemophilia. Individual experiences may vary. These patients were compensated for their time creating this content.


Last Updated: November 2023