A conversation Last night I dreamed that I spoke with my father. I asked him how he knew he had a bleed. Did his knee bubble like a soda? Was it tight, but not painful? I yearned for his input, but my alarm sounded before he was able…

I am not merely a carrier of hemophilia. I am certainly not an asymptomatic carrier of hemophilia. I am not even a symptomatic carrier of hemophilia. I am a woman…

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…

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…

Recommendations for vaccination practices for patients with hemophilia should be reassessed in an effort to minimize fear and emphasize the importance of vaccination to prevent infections, suggests a survey among physicians in Germany. Data from the PEDNET registry, a database of children with hemophilia, suggest that vaccination in close…

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…

Inadequate access to treatment centers, lack of expert care, and high bleeding rates lead to similar joint complications in hemophilia patients with and without inhibitors, and joint problems in 70% of the people taking part in a recent study in five developing countries. The research, “HAEMOcare:…

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…

Based on feedback from the hemophilia B community, Aptevo Therapeutics announced that a 3,000 international unit (IU) vial assay of Ixinity  is now available for patients preferring the convenience of a larger assay over the smaller IUs on the market for this intravenous recombinant factor IX. The…

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…