When people find out that my husband, Jared, has hemophilia and epilepsy, they often say things like, “You’re so strong,” or, “You’re such an inspiration.” He usually smiles politely, then tells me later, “I’m not special. This is just my normal.” That line…

During the National Conference for Women with Hemophilia and Rare Factor Deficiencies, held Oct. 3-5 in Detroit, I joined a standing-room-only session titled “More Than One Story: Exploring Joint Health in Hemophilia, Hypermobility, and Beyond.” It was refreshing to see hypermobility on the agenda — a topic that resonates…

Doctors discovered a rare combination of blood clotting disorders — acquired hemophilia A alongside an inherited disorder called Factor XII deficiency — in a 70-year-old man set to undergo a leg amputation due to foot gangrene. “This case highlights the importance of considering acquired hemophilia A in unexplained bleeding…

I’m a hospice chaplain, and one day I was at the nurses’ station, completing my notes from a patient visit, when the fire alarm sounded. Startled, I turned to the nurse, who said the alarm had been going off all day due to a system glitch. The piercing, unrelenting sound…

I recently helped a colleague with an exhibit at a fall festival. The venue was an assisted living facility, and we provided games and treats for the residents and children in the community. Our inflatable blue pool with colorful plastic fish made for a fun fishing expedition for all…

Most people living with chronic illness wrestle with difficult emotions at one point or another, such as frustration, fear, guilt, or helplessness. My husband, Jared, is no exception. Living with hemophilia B — and later epilepsy as a complication from a brain bleed — means constantly negotiating what he…

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.

I grew up outside the city limits of Houston. My childhood was idyllic. I am one of the few who say my high school years were some of the best of my life. When I went to college, I attended a university on the other side of town. I…

Last Friday, I went about my day as usual. It’s one of my days off, and I was looking forward to some free time. As I made plans for the weekend, my phone started ringing. I looked at the screen and saw my youngest son Caeleb’s face. I smiled because…

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…