Columns

Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…

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…

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’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…