My husband, Jared, doesn’t need a gym anymore, or dumbbells, or fancy machines. These days, all he needs is the floor, a bit of space, and his body. He still loves the gym and would gladly pick up free weights when the opportunity arises, but there’s something quietly powerful about…

Even now, I hesitate to tell doctors I have hemophilia. I’ve lost count of how many times I’ve been met with blank stares, skepticism, or outright dismissal. Instead, I’ve learned to say, “I have a bleeding disorder.” It’s safer. It avoids the uncomfortable silence, the subtle smirk, or the…

Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it. Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability…

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…