When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding…

Note: This story was updated June 11, 2025, to correct the number of weeks the woman in the case study was pregnant to 36. A woman carrying a hemophilia B genetic mutation received regular factor IX (FIX) replacement therapy during pregnancy and successfully delivered her baby with no severe…

Laughable. That’s how Heidi Bentz and Lucrecia E. Choto, two women who struggled for years to receive a proper diagnosis of von Willebrand disease (VWD), described the results of a 2004 survey by the U.S. Centers for Disease Control and Prevention (CDC) of 75 women who…

When my husband, Jared, was growing up, people in his community didn’t always speak kindly about mobility aids. Crutches, wheelchairs, and canes were often seen as signs of helplessness, things you turned to only when you’d run out of options. That perception stayed with him well into adulthood. He did…

My household is navigating a season of major change. As the family of a frequently relocating pastor, we’ve honed our adaptability, mastering the rhythm of moving with grace and resilience. This summer we’ll exhibit that adaptability again as my husband moves to a new appointment in Las Cruces, New…

Plan D. That’s what I’m working on now. Last week, I learned that a factor VIII (FVIII) product I’m taking for my hemophilia has had some disappointing results. I can’t say I’m surprised about that, as I had a negative reaction to the medication, including feeling lightheaded and…

My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…

Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we…

Lately, I’ve been thinking about what it means to be an expert. In my work as a virtual marketer and strategist, the word gets used all the time. People in my profession are expected to act like we know exactly what we’re doing. We’re told to speak with…

My youngest son, Caeleb, received great news last week from his college, the University of New Mexico: A letter confirmed that he has a dormitory room for school next year. When he showed the letter to my wife, Cazandra, and me, we shouted for joy. Everything associated with our…