I love the final-night event of a national bleeding disorder conference. Different groups invite community members to play games, the meal is remarkable, and the dance floor begs for us all to gather and celebrate. After the highly informative events offered by leaders in the bleeding disorder community, friends…
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It was Christmas in 1978. My brother was thrilled that Santa had brought him exactly what he wanted — a large, bright red firetruck with a ladder that really worked! (Never mind that we were Jewish. Santa always seemed to make an appearance at our home anyway, and we never…
It’s bluebonnet season in Texas. The state flower crawls across the hillsides and along the roads, bringing a vibrant blue to the landscape. People flock to the most prominent patches to sit among the flowers and capture pictures. It’s a Texas tradition. The last time I took pictures in a…
When my kids were little, people reminded me to enjoy my children because they would be in college before I knew it. I never thought much about that sentiment. With both of my sons living with severe hemophilia, I felt like I was going from one thing to the…
The pain that accompanied my periods was excruciating, exacerbated by my two bleeding disorders, hemophilia B and von Willebrand disease. I vividly recall my gynecologist explaining that during a bleeding episode, the severity of my clots and bleeding was comparable to giving birth during menstruation, and thus it…
Alaska, Antarctica, and Greenland have something in common: They’re a few of the places where glaciers are present. A glacier is a large, slow-moving mass of ice and snow that forms over an extended period in areas where more snow accumulates during the winter than melts during the summer. Many…
Preventive treatment with Hemlibra (emicizumab) appears to be safe and helps keep bleeding under control in babies who have severe hemophilia A. The number of bleeds was “zeroed out” in nearly half of the babies, and most had zero bleeds requiring treatment. That’s according to interim results from…
BAX 855 (Adynovate) is an approved factor replacement therapy, developed by Baxter International to prevent and treat bleeding in people with hemophilia A. How BAX 855 is manufactured BAX 855 (or rurioctocog alfa pegol) is a PEGylated molecule of full-length recombinant factor VIII (FVIII) produced in Chinese hamster ovary…
Researchers have identified immune system proteins that might drive the development of inhibitors, or neutralizing antibodies, against factor VIII (FVIII) replacement therapies in people with hemophilia A. These proteins, called complement proteins, appear to work collaboratively with danger signals that alert the body to critical situations in order to…