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How your hemophilia experience is shaped by when you were born

When dealing with health issues, does when you were born matter? For those living with hemophilia, the answer is a resounding yes. Having personally experienced the challenges of living with bleeding disorders and survived multiple life-threatening situations, I can’t help but reflect on how different my medical journey might…

Hemgenix given to treat first hemophilia B patient in US

A first adult with hemophilia B in the U.S. has been treated with commercially available Hemgenix (etranacogene dezaparvovec), a recently approved and first gene therapy for the disease, CSL Behring announced. “As part of our longtime promise to patients, CSL Behring is thrilled to mark this latest milestone…

What not to say to women with hemophilia

I rarely disclose my diagnosis of hemophilia B and von Willebrand disease to others. I don’t like to speak about it, which is odd for someone who writes a column on the topic. Writing is different, though. I hope it will make a difference. By sharing…

Hearing pop songs through the prism of living with hemophilia

The power of music cannot be underestimated. Its universality has the ability to connect people across places and cultures. Many people also find music healing. They can find solace in lyrics and melodies that evoke pleasant emotions or that mirror their emotional states. Why does this happen? Music activates particular…