Last week, I had two dental procedures that required pretreatment because of my hemophilia B and von Willebrand disease (VWD). After prepping one of my teeth for a crown, my dentist took an X-ray that revealed an abscess, which meant I needed a root canal, too. Both procedures…

Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders. According to the group’s founder, Taylor Kane, whom I interviewed back in April, the campaign was created to combat…

As someone with attention-deficit/hyperactivity disorder, I crave a challenge. It doesn’t even have to be a significant one, just something that gives me a little feeling of accomplishment. A small win early in the day, such as solving a tricky problem, tidying a corner of my space, or…

“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…

The kitchen buzzed with energy. Cookies were in the oven, a skillet of deliciousness simmered on the stove, and fresh tortillas were being rolled out on the counter. When my oldest son, Julian, and I cook together, we’re like Fred and Ginger, knowing each step and anticipating…

A few years ago, I woke up to find my right breast swollen, hot, red, and extremely painful. Beneath the skin was a lump that felt about the size of a golf ball. I’d had mastitis before, in the other breast, so I wondered if this pain could be…

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…