Some words can be offensive. I’m not talking about some of the obvious, obnoxious words in the world, I am talking about two words in particular: disease and disorder. If you look at a list of rare diseases, hemophilia is listed. But you don’t ever hear anyone say,…

When my first son, Julian, was born in 1996 and diagnosed with severe hemophilia A, I thought my world was ending. I expected to give birth to a healthy baby boy. I never dreamed he’d have a medical condition. I went through the stages of grief: denial,…

At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number…

This week, my youngest son, Caeleb, visited the pediatric clinic for his last comprehensive exam there. My mind went in a million directions as I recalled meeting his hematologist, Shirley Abraham, MD. She witnessed the tough times when my son struggled through many painful spontaneous bleeding episodes because…

My son Caeleb is 14 and entering high school this fall. He is at an age in which I, as a parent, do not speak on his behalf in front of him. He is old enough to share his story about his hemophilia diagnosis when he deems it appropriate. I…

Children and young adults with hemophilia A and hemophilia B have several behavioral problems, ranging from depression and anxiety to aggressive behaviors, a small study suggests. Age, disease severity, and joint disease duration were found to be significantly correlated with several of these problems. The findings were reported in the…

I will never forget the day my wife told me that she was pregnant with our first child. I stood there, unable to process her announcement of our boy’s impending entry into the world. I couldn’t fathom how my life would change. I struggled to figure out how I might…

A greater range of motion before surgery is associated with better post-surgical outcomes for people with hemophilia who undergo knee replacement surgery. That’s according to a recent study that also found that having the surgery on both knees at the same time had a negative impact on the overall…

Hemophilia doesn’t just alter bodies and routines. Over time, it can also quietly shape expectations about who leads, who manages risk, and who carries responsibility. These expectations are rarely spoken out loud, but they’re powerful enough to follow people into adulthood, partnerships, and marriage. What complicates things is that…

A cursor blinking on a blank page. A fresh blanket of snow. A blank canvas with new paint ready to be used. Like these images, the new year represents a blank slate and hope for what’s to come. Many people make New Year’s resolutions, such as losing weight, exercising more,…