Many years ago, friends told me about a workshop they attended, which addressed newly diagnosed patients with bleeding disorders. As they talked about the class, I agreed with everything I heard until one of the facilitators said that with a new diagnosis comes a sense of mourning. “Yes,” I…

My youngest son, Caeleb, recently turned 15. A celebration with his favorite dinner accompanied by homemade chocolate-peanut butter cheesecake ushered in another year filled with goals and dreams. After Caeleb blew out the candles, he looked up and said, “In three years I’ll be out of the…

“Motherhood is messy. And challenging. And crazy. And sleepless. And giving. And still unbelievably beautiful.” — Rachel Martin For me, motherhood is all of these things that blogger and author Rachel Martin suggests it is. Quite often it is tiring. Every day, I have a lengthy to-do list to…

I often get caught up thinking about things I did not do for my sons, who have hemophilia. I worry about the many deficiencies I have, and how they affect my sons’ lives. Dealing with a bleeding disorder is more than enough to worry about, but do they feel…

In our work as professional online sellers, my husband, Jared, and I occasionally encounter difficult clients. Sometimes they send several messages to our social media channels outside of our office hours. Or they’ll threaten to leave a negative rating because of an odd hiccup in our services. And don’t…

Eloctate can induce immune tolerance in people with hemophilia A more quickly than other regimens, a study suggests. The study, “Real‐world data of immune tolerance induction using recombinant factor VIII Fc fusion protein in patients with severe haemophilia A with inhibitors at high risk for…

A mechanism largely left unexplored was shown to help regulate factor VIII (FVIII) — the clotting protein that is missing or defective in people with hemophilia A — in a study in mice. While early and preclinical work, it is reported to be the first study of this mechanism…

I started writing for Bionews, the publisher of Hemophilia News Today, almost three years ago. However, it recently dawned on me that I never mentioned why I named my column “In the Twinkling of an Eye.” While amazingly simple on the surface, the answer has deep layers that may…

Roctavian, an investigational gene therapy, significantly reduced bleeding rates and the need for other treatments in men with severe hemophilia A over at least one year, top-line data from a Phase 3 clinical trial show. The therapy’s durability in sustaining factor VIII production at levels necessary to…

Two weeks ago, my daughter helped me move a small refrigerator. I had the front end and she had the back, which was open and exposed various parts. When we arrived at our car, I noticed her finger was bleeding quite a bit. The cut appeared to be long but…