Everyone experiences anxiety, yet not necessarily at the same level. When getting on an airplane, making a doctor appointment, or otherwise triggered, the anticipation and worry about what will happen can get the best of people. Some would argue that they do not have anxiety. It’s often these people who…

Last month, I had the pleasure of meeting another “HemoWife” at an event organized by the hemophilia organization that my husband, Jared, is involved with. Her name is Anne, and she’s married to Jundee, who has severe hemophilia A. She and I had a quick chat, during…

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…

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…

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…

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…

Last year, I met Kayla Mack through a Facebook group for people with von Willebrand disease (VWD). Kayla has type 3, a severe form of the condition. She reached out to the group for help after a terrifying visit to the emergency room. She wrote, “I’m getting very afraid…

Three years after receiving the one-time gene therapy Roctavian (valoctocogene roxaparvovec) at trial, the majority of men with severe hemophilia A in the Phase 3 GENEr8-1 study were off standard replacement therapies and did not experience any bleeds requiring treatment. That’s according to new data announced in a…