It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…

I recall an early experience with anxiety. I was standing at the back of the church, ready to appear before the congregation to offer the sacrament of communion. But something held me back. The more I fought my feelings, the more I struggled. I took labored breaths as I stood…

Clotting proteins that are missing or are defective in hemophilia can directly affect the activity of cells responsible for maintaining bone health, a study found. The findings shed new light on why bone problems are a common issue among people with hemophilia, researchers said. The study, “…

Living with hemophilia B and von Willebrand disease means getting used to things that most people would consider unusual. Bruises appear without explanation. Minor injuries take longer to heal. A routine dental visit requires more planning than most people would ever imagine. And sometimes, the body sends…

Rap sessions are common at bleeding disorder conferences. During these group discussions, people come together to talk about similar interests, such as a new diagnosis in the family, inhibitors, or what it’s like being a hemo parent. Facilitators help the participants ask questions of one another and have meaningful…

Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the…

Hospitalizations are disruptive. When someone has to go the hospital, day-to-day routines take a back seat. Being at the hospital becomes the top priority and life must move around the illness. But when a patient and family experience constant hospitalizations, this becomes their normal routine. My youngest son, Caeleb,…

One of the best things about my relationship with my wife is our team approach to difficult circumstances stemming from hemophilia. I tend to remain calm at the beginning of a problem, while she is active toward the end. Our responses mostly happen automatically, like clockwork. We are grateful…

The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…

Stop the Bleeding! is a comedy web series set at a fictional non-profit organization. The award-winning series features various members of the dysfunctional organization and the conveniently placed hemophilia treatment center (HTC) next door in a mockumentary style. MORE: Six of the best mobile apps for managing…