Skip to main content

Emily’s Story: How Access to Care Changes Lives

Video: Catching up with one patient 10 years after her family advocated for access.

Story

 

Emily Bartko is a one in a million kid. The 13-year-old from Las Vegas is living with congenital afibrinogenemia, an ultra-rare hereditary bleeding disorder that the National Institutes of Health says affects one in one million newborns. People with the condition can suffer uncontrolled bleeding due to a missing factor in their blood.

Get the latest stories from Vita by signing up for our newsletter.

Ten years after her family went to Washington, D.C. to successfully advocate for access to care, Emily is living the life of a typical American teen. Hear from Emily and learn more about her journey in the video above.