No, really: Committing to
your hemophilia care desires

Preparation makes hemophilia self-advocacy much easier

Shellye Horowitz describes information she collects and documents to back up her positions when communicating with her doctors.

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About the series

We listened to the conversations happening across the hemophilia community to uncover the questions and challenges that matter most. In this video series, community members share their personal journeys, hard-won wisdom, and advice for navigating life with this condition. These are voices of experience from real people who truly understand.

Episodes

You are entitled to demand better hemophilia treatment

Julian MacDonald shares his perspective on owning your own care, and not feeling embarrassed to speak up if it is not satisfactory.

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Setting the standard for hemophilia care

Thomas Graham describes an experience with a hospital that understood hemophilia, and had protocols in place to properly treat patients.

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Preparation makes hemophilia self-advocacy much easier

Shellye Horowitz describes information she collects and documents to back up her positions when communicating with her doctors.

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Confidence starts with understanding your hemophilia story

G Shellye Horowitz shares how learning to understand and share your story can help you communicate effectively with your healthcare team.

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Don’t wait for others to fight your battles with hemophilia

Julian Macdonald shares why self-advocacy has been essential to his journey and the driving force behind his care.

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The lasting impact of pain in hemophilia care

Thomas Graham shares how lingering pain and joint damage continue to affect quality of life long after bleeds are treated.

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Navigating insurance challenges in hemophilia care

Thomas Graham shares his experience fighting insurance barriers and why patients must advocate for their own care.

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Understanding how hemophilia treatments work in your body

G Shellye Horowitz explains why requesting pharmacokinetic testing can help ensure therapies meet individual needs.

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Hemophilia treatment should keep up with your life pace

G Shellye Horowitz explains how switching from on-demand treatment to prophylaxis helped her stay active and prevent repeated bleeds.

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Demand explanations to unexplained hemophilia pain

Thomas Graham shares how unexplained pain before his diagnosis was often dismissed.

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The keys to powerful self-advocacy with hemophilia

Julian Macdonald shares advice on training oneself in self-advocacy with hemophilia.

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Raise a ruckus for the hemophilia care you deserve

Thomas Graham shares why patients sometimes must push to be heard in emergency settings.

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