Columns

I’ve lost count of how many times I’ve seen phrases like “victims of hemophilia” or “afflicted with hemophilia” in local news articles. Sometimes the phrase is “suffering from hemophilia.” To many readers, these words might sound sympathetic — even caring. But to those of us…

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…

Last in a series. Read parts one and two. For 21-year-old Domenic Catrine, hemophilia B once dictated every part of life, from wearing a helmet during childhood playtime to college routines shaped by weekly factor infusions. Then he underwent gene therapy during his sophomore year in…

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.

Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…

Second in a series. Read part one. For most of his life, 21-year-old film student Domenic Catrine assumed weekly infusions were his destiny while living with hemophilia B. By the time he entered college, the rhythm of mixing vials and finding veins had become routine — even if…

Two common themes that appear in my columns are conflict and reconciliation. Once a problem has been resolved and I can reflect on it, I look for insights about how to face the struggles of living with hemophilia. Taking the time to do this has resulted in a change in…

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…

First in a series.  Treatment for people living with hemophilia has long meant a lifetime of infusions, careful planning, and constant vigilance. But new therapies are rewriting what’s possible, particularly gene therapy. Domenic Catrine is a charismatic 21-year-old who lives with severe hemophilia B. A junior in college…