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…

February is traditionally known as the month of love. Yet while Valentine’s Day is over, the act of appreciating loved ones knows no time or place. My husband, Jared, and I have been together for almost nine years. Our relationship is somewhat unconventional — he has hemophilia and a…

In the marketing world, we have a concept called the elevator pitch. An elevator pitch is a short, persuasive speech delivered in the time it takes to ride an elevator, hence the name. The goal of an elevator pitch is to quickly and effectively communicate a person’s ideas, product, or…

Pain, depression, and anxiety medications are used more frequently by hemophilia patients than by the general population, according to an 11-year study across Nordic countries. However, the use of these medications in people with hemophilia was not found to be associated with their use of factor replacement therapies.

I have fond memories of my dad sitting at the kitchen table on Sunday mornings. After attending church, he read the newspaper while the radio played his favorite Tejano music. He always read articles to my mom as they sat together, enjoying the morning. The crisp newspaper would buckle as…

I’ve learned to expect the unexpected when dealing with my bleeding disorders. A few days ago, I took a bike ride with my twin nephews who were visiting from Wisconsin. My small city of Punta Gorda, Florida, has a great bike loaner program. Bicycles, tricycles, and handcycles are available…

Tattoos and piercings are artistically and sociologically significant in cultures across the globe. Throughout history, people have held varying opinions about each. But now that we’re a more global community, these skin-deep forms of self-expression have largely become mainstream. I have a couple tattoos, as well as numerous piercings in…

In September, I decided to revamp my pathetic and inconsistent fitness routine. In a moment of desperation, I ordered a Peloton bike. I needed to lose weight and was out of shape. Not a good feeling. With my bleeding disorders, walking causes my foot and knee to swell. I…