Last week, I discussed the unfortunate series of events that led my wife and youngest son, Caeleb, to check into Memorial Hermann-Texas Medical Center in Houston because of a bleeding episode. Caeleb, it turned out, had a high-titer inhibitor that prevented clotting from occurring, even with the help…

Hello, hiring managers and human resources (HR) professionals! I’m writing this column to you, as the spouse of a person with disability (PWD). My husband, Jared, has severe hemophilia B and a seizure disorder, and we worked together at the same company for a year. I’ve also seen him…

When my youngest son, Caeleb, now 17, was 11 months old, he had a bleeding episode that shook us to our core. We’d recently moved to New Mexico from Houston and didn’t yet know our new medical team. Because my wife, Cazandra, had promised to play oboe at…

After worship on Sunday, the church I serve as pastor has a fellowship hour, when everyone comes together, enjoys coffee and snacks, and visits with one another. It’s a beautiful time and a great way to start the week. Snacks and goodies are a treat — and then there’s the…

Most people with severe hemophilia A who were given once-weekly treatment with efanesoctocog alfa in the Phase 3 XTEND-1 trial were bleed-free over a year on treatment. The therapy also improved joint and overall physical health and eased pain intensity in the participants compared with previous treatments. Results…

Given all the mass shootings, economic uncertainty, and contentious political discourse happening in the United States right now, it’s easy to see that our country is in a state of chaos. Yet, I continue to draw hope from the words of Maya Angelou: “When you know better, do…

One of my favorite programs is CBS “Sunday Morning,” which my husband and I record and watch on Sunday afternoons. One of its recent stories brought me to tears. At Glen Lake Elementary in Hopkins, Minnesota, several students have physical disabilities. The children in Betsy Julien’s fifth grade class…

An investigational factor VIIa (FVIIa) therapy called GEN-0828 may be able to minimize blood loss and accelerate blood clotting at lower doses than NovoSeven, an approved medication used to control bleeding in hemophilia patients, according to a study in a mouse model of hemophilia B. Still, both treatments…

The World Federation of Hemophilia (WFH) has launched a registry to monitor long-term outcomes of safety and effectiveness for people with hemophilia who receive gene therapy treatment. The aim of the WFH Gene Therapy Registry (GTR) is to collect data for all patients who have gene therapy, whether through…

In the early days of a diagnosis, emotions run wild. Anxiety, helplessness, and anger are a few feelings that cloud the mind, and it’s difficult to even begin to understand what lies ahead. In 1996, my first son, Julian, was born and diagnosed with severe hemophilia A. In…