The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now…

Caeleb, my youngest son, is 19 and preparing for his second year of college at the University of New Mexico. He’s experiencing an issue at school that required him to write a letter explaining the difficulties he faced because of hemophilia during his freshman year. As a child, he…

Several years ago, I spoke at a great bleeding disorders conference in California. Around 300 people attended, and we all had wonderful interactions. The attendees engaged with one another and found hope in their shared experiences. I left the conference energized and proud to be part of such a…

Mother Nature was not kind to my area of Florida last year. First came Hurricane Helene, bringing widespread flooding. Just two weeks later, Hurricane Milton struck, unleashing high winds and another round of devastating floodwaters. The effects are still visible today: Businesses have shuttered, restaurants remain closed, and the damaged…

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…