When people hear the word “hemophilia,” they often picture severe bleeding, bruising, or swollen joints. Those are the visible symptoms, the ones doctors, nurses, and even family members understand. But living with a bleeding disorder is so much more than what meets the eye. There are symptoms we…

Ixinity (trenonacog alfa) can effectively prevent and control bleeds in young children with severe or moderately severe hemophilia B, according to data from a Phase 3/4 clinical trial. “This study showed that [Ixinity] was safe and effective as prophylaxis and for controlling bleeds in previously treated persons with…

Four years after treatment with the gene therapy Hemgenix (etranacogene dezaparvovec), most people with hemophilia B aren’t taking preventive therapies and annual bleeding rates remain substantially reduced, new data from the Phase 3 HOPE-B trial shows. CSL Behring, which markets Hemgenix, presented the results at the 18th…

I’m a big fan of the stage version of “Wicked.” In the opening of the second act, Glinda (the “Good”) is standing in front of the citizens of Oz, sharing her delight in being center stage. She expresses her humblest gratitutions (you’ll understand why I’m using that strange…

Valentine’s Day is a holiday that celebrates love. However, the day’s origin doesn’t involve a hard-to-get dinner reservation, the perfect Valentine’s card, and the best box of chocolates, but rather a martyred saint and a massacre. Fortunately, our 21st-century world has a more pleasant understanding of the day. While this…

The first thing you’ll see when you walk into my storage shed is an all-terrain knee scooter. To the left, there’s a wheelchair, and to the right, a walker. Moving to my bedroom closet, you’ll find crutches, multiple canes, a walking boot, ankle and knee braces galore, Ace bandages, self-adhesive…

Since my diagnosis at age 10, I’ve always received treatment at federally funded hemophilia treatment centers (HTCs) — except for a brief period when my insurance didn’t cover my hematologist. Most hematologists don’t specialize in bleeding disorders, which can be complex to diagnose and treat. Without the expert care provided…

The added expenses of a bleeding disorder — beyond medical costs — are rarely discussed in our community. Yes, I’m talking about the dreaded M-word, which can evoke many negative emotions. Money affects every part of our lives, and for some of us, our relationship with it results in feelings…

It’s impossible to turn on the TV and not find a reality show, in any of its many types. Some are like staged plays that claim to be real, yet they’re often scripted and orchestrated before they’re shot. Others are more social experiments in which human behavior is observed and…

In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to eat my favorite food: Ethiopian! Suddenly, I felt a sharp, shooting pain in my hip. It…