It can be so easy to be mad, particularly at the medical system. Even more so if you happen to be a woman with hemophilia. As I’ve shared a number of times, women with hemophilia have struggled for years to obtain a proper diagnosis and appropriate care.

Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves. As someone with hemophilia, I felt this way. Strongly. Until last week. As I’ve mentioned…

Some days, my husband, Jared, who has severe hemophilia B, is unstoppable. He’ll haul a heavy plant pot across the living room, rearrange furniture, or even knock out a workout that would leave me sore for days. On other days, he’s down for the count; there’s no negotiating with…

Dinner with friends is a delightful escape from the daily grind, a precious opportunity to share moments of love and presence. Recently, another couple invited my husband, Joe, and me to dinner at their home here in Las Cruces, New Mexico. The prospect of spending quality time with them and…

I can already tell this journey will be long, and that sucks. I remind myself to breathe. Inhale for a count of three, hold for a count of four, exhale for a count of five. Repeat. I wring my hands, fight back tears of frustration, and try again. I name…

The other day, I watched my husband, Jared, handle a parenting moment in a way that surprised me. He didn’t scold or lecture our young daughter. He didn’t swoop in with a tidy “lesson learned” speech. Instead, he did something that some parents might find unconventional and even controversial: He…

Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky…

My wife, Cazandra, and I enjoy speaking on topics critical to the bleeding disorders community, as both of our adult sons live with hemophilia. A few weeks ago, we had the chance to lead a seminar called “Telling Our Stories” at the National Bleeding Disorders Foundation’s (NBDF) annual…

Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned. But for me, the…

I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…