I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds, eating foods that might trigger symptoms, resting all day, or even doing something that looks “wrong”…

Last in a series. Read parts one and two. After our oldest son, Julian, was born and we took him home, the first six months went smoothly. His hemophilia diagnosis came up occasionally, but it didn’t directly affect our quality of life. We later learned that those early…

Preventive treatment with Hympavzi (marstacimab-hncq) can effectively reduce bleeding rates in people with hemophilia A or B who have inhibitors, or antibodies against standard replacement therapies, according to top-line data from a Phase 3 clinical trial. Hympavzi’s developer Pfizer said it’s now planning to discuss these…

Second in a series. Read part one. The birth of our oldest son, Julian, was a milestone event in our lives. After all the excitement and drama of that stormy June evening in 1996, things calmed down for the rest of the night. My wife, Cazandra, rested in her…

I am in a video game. My mission: Fight the medical bureaucracy and access care. I must complete three levels and capture the golden key, which unlocks a fortress where healthcare is obtained. I’m stuck on Level 2. No matter what I try, I can’t gather the tools to unlock…

First in a series. My story starts on a hot and humid night in June 1996 in Houston. As my wife, Cazandra, and I entered the hospital, we couldn’t help but notice the storm gathering outside. We approached the check-in counter, and I explained to the attendant that…

The summer months bring relentless heat. In the desert of New Mexico, where we live, the thermometer often hits triple digits. While some people love the heat, others tolerate it, seeking shelter in the shade of a tree or in an air-conditioned area. Staying cool isn’t just a…

The benefits of a one-time gene therapy were sustained for up to 13 years among men with severe hemophilia B with no new safety concerns emerging, according to newly published results from a clinical trial. The findings, which encompass the longest ever follow-up for a gene therapy study in…

At 6 p.m., Monday through Friday, my television is faithfully tuned to “Jeopardy!” The theme song and sounds of the buzzers usher in a comforting ritual each night that’s part of my home. “Jeopardy!” is a long-running quiz show where contestants are given the answers and must respond with a…