Sometimes I hear other women joke about their husbands being their “extra child,” and I can’t help but nod in understanding. Living with Jared, who has severe hemophilia B and a seizure disorder, means I occasionally slip into caregiver mode with him, too. But here’s what might surprise you:…

Last Sunday, I preached about a blind man named Bartimaeus. The people told the blind beggar to arise and go to Jesus, who wished to see him. It dawned on me that the people surrounding the man functioned as his advocates. Upon hearing the words of Jesus, the crowd…

The U.S. Food and Drug Administration (FDA) has pushed back by more than one year a decision on Roctavian, the potential first gene therapy for adults with hemophilia A. In a complete response letter that took the therapy’s developer, BioMarin by surprise, the FDA said it needed…

“Write about the first time you witnessed me with a bleed,” offered my husband Jared as we talked about my column over breakfast. Couples usually remember firsts. The first date. The first kiss. The first of anything special or unique to both of them, including the good and…

A Phase 4 trial investigating Ixinity as a prophylactic treatment for children under age 12 with hemophilia B has reached the halfway mark for its enrollment target, Medexus Pharmaceuticals announced. The international study (NCT03855280), taking place at sites in Brazil, Colombia, Moldova, South Africa, and Ukraine, continues recruiting eligible…

With the holiday season fast approaching, many of us are clamoring to buy gifts for the people we hold dear. But it can be hard to find gifts even for those closest to us. This is especially true if they’re easily satisfied or, on the other end of the spectrum,…

Moving is challenging. Moving means packing, having to decide what to keep and what not to keep, learning a new place, having to find a new grocery store, a new hair and nail salon, a new healthcare provider. Doing all that this time offered an opportunity to remember and…

Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…

Moderate muscle rehabilitation exercises — based on the use of elastic bands or training machines — are safe and effective for people with severe hemophilia receiving prophylactic (preventive) treatment, a study suggests. The findings of the study, titled “Electromyographic and Safety Comparisons of Common Lower Limb Rehabilitation…

There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want…