As a woman with hemophilia B and von Willebrand disease, I understand the importance of awareness about bleeding disorders in women. How can you convince an ER doctor that you are a woman with hemophilia if they don’t believe such people exist? We do, even though the…

I must admit right off the bat that I’m a big fan of the musical “Hamilton.” I saw a production of it in Chicago and felt its energy flow through my veins like lightning. The dancing was nonstop, and most of the music was upbeat with a driving rhythm.

It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed. My husband, Jared, always an early riser, often gets up first. Today is no exception. He goes to our kitchen downstairs, contemplates what he’ll…

People with moderate-to-severe hemophilia and ankle joint disease reported significant impairments in life quality and foot and ankle function, according to a recent U.K. study. Chronic pain emerged as a significant predictor of these patient-reported outcomes, as did the presence of inhibitors — neutralizing antibodies that can lower the…

I love assembling jigsaw puzzles. There’s a sense of satisfaction as the individual pieces come together to form a beautiful picture, and the essence of creation feels empowering. My thoughts turn to the many times when wrestling with my sons’ hemophilia felt eerily similar to working on a jigsaw puzzle.

Hemgenix (etranacogene dezaparvovec), the first gene therapy approved for adults with hemophilia B, has been shown to work better than standard preventive replacement therapy to lower the frequency of bleeds — both spontaneous and joint bleeds — in this patient population. The therapy also was superior in…

When my boys were little, I dreamed about what their chosen activities might be — band, swimming, theater, or maybe soccer. I wanted to be a soccer mom, cheering on my sons from the sidelines and bringing orange slices for the team. My oldest son, Julian, did play soccer…

Last week, my husband, Jared, experienced a bleed above his knee joint. We were out on a day trip when he noticed the first symptoms. He felt a tightness in his knee, which he initially attributed to climbing several flights of stairs. It wasn’t painful for him, but as…

I remember watching “The Wizard of Oz” as a little girl. While the visual effects now appear primitive compared with today’s high-tech productions, the movie scared me when I was a kid. The scene where Dorothy was trapped in her house as the tornado lifted it into the sky seemed…

The European Commission has conditionally approved Hemgenix (etranacogene dezaparvovec), a one-time gene therapy to treat adults with hemophilia B. Hemgenix, originally developed by uniQure, is approved for adults with severe and moderately severe hemophilia B without a history of inhibitors. It’s the first gene therapy for…