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…

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,…

Weeds. They’re inevitable. In the desert of New Mexico, where we live, fighting weeds after an active monsoon season means pulling them from xeriscape yards. The yard rocks make it difficult to eradicate weeds. It’s a tireless task to complete in the desert heat, especially when that active monsoon…

My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding…

My youngest son, Caeleb, recently graduated from high school and, at 18, is legally recognized as an adult. This milestone brings a host of new responsibilities and rights: He can vote, buy and sell property, sue or be sued, and enter into binding contracts. Despite all our preparation for…