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The first hemophilia B patient in Germany has received the gene therapy Hemgenix (etranacogene dezaparvovec), according to CSL Behring, the therapy’s developer. “The treatment of the first patient in Germany with Hemgenix marks a milestone in hemophilia B therapy,” Christian Wieszner, managing director of CSL Behring Germany,…

I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford…

Note: This column describes the author’s own experiences with surgical procedures. Not everyone will have the same response to these operations. Consult your doctor about the potential risks and benefits of any procedure you’re considering. As I get older, the thought of needing any kind of surgery scares the…

The advancements in modern medicine have meant that people with hemophilia are living longer than ever, however, this brings its own set of problems for the medical profession. People living with the disease are just as likely to have other health issues when they get older as those without hemophilia,…

Several of my recent columns centered on my frustration with hemophilia entering my sons’ lives at the most unexpected times. I wrote about some extraordinary moments we shared that, in the twinkling of an eye, were interrupted by an unforeseen health complication. A sense of failure would…

I am in a video game. My mission: Fight the medical bureaucracy and access care. I must complete three levels and capture the golden key, which unlocks a fortress where healthcare is obtained. I’m stuck on Level 2. No matter what I try, I can’t gather the tools to unlock…