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About this time every summer, my social media feeds begin to fill with lots of smiling faces from hemophilia camps across the country. Photos showing kids pursuing myriad activities — from fishing to wall climbing to crafting — share a common theme. They are fun, relaxed kiddos doing what…

When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years after his older brother did, but reducing oversight of infusing to one child proved liberating. Before the Younger’s independence, my wife and I still actively participated…

Severe, moderate, and mild: These are the degrees with which a person with hemophilia is labeled based on the percentage of clotting factor in their blood. With the word “severe,” one might automatically think it is the worst kind of hemophilia. This level means that a person has less…

Over the past few years, I have had the pleasure of connecting with many women who are diagnosed with hemophilia A, hemophilia B, or as symptomatic carriers. These women have so many stories to share. The thread of commonality in their journeys is their struggle…

When I was a kid in the 1970s and ’80s, I thought children who had trampolines in their yards were amazing. Being invited over to jump on a friend’s trampoline was a special treat. Later, as a teacher, I lost track of how many of my students acquired injuries from…

When someone has a hemophilia diagnosis, they receive treatment in one of two ways: on demand, in which they are given products to help their blood clot after an injury or before a scheduled medical procedure; or prophylaxis, which…

One issue that faces many families with chronic illnesses is lengthy hospitalizations. The entire household is affected by the disruption in schedule and routine. Life changes drastically for everyone involved. The child in the hospital must spend precious time away from regular activities and friends. Social interaction moves from…

I’m happy to finally be an official member of the Father’s Day club. I’ve learned much from the way my own family raised me. It’s an uphill battle raising our daughter Cittie with the occasional bleed dragging me down. But seeing her mature so quickly…

Twenty-three years ago, my life changed dramatically. I became a mom. My firstborn, Julian, entered the world screaming at the top of his lungs with a head full of crazy black hair. I imagined him thinking, “Put me back in!” When he was laid on my chest, I was overcome…

In the past, no one believed women could have hemophilia. The medical community assumed that one X chromosome would compensate for the other. Doctors now know about the process of duplicate X chromosome inactivation, called “lyonization.” As the inactivation process is random, some female…