Over the years, I’ve expressed my creative side in ways I never imagined possible. The space intended to be the formal living room in my home is, instead, my quilt room. Sewing machines (yes, plural), fabric, colored markers, pens in Mason jars, paper for greeting cards, and brightly colored yarn…

Last week, my wife, Cazandra, and I attended the National Bleeding Disorders Foundation’s (NBDF) annual symposium. As parents of two adult sons who have severe hemophilia A, or factor VIII deficiency, we’re familiar with the lay of the land. The conference provided a space for us to discover…

Kids have a way of flattening the extraordinary into the ordinary. My 6-year-old daughter once scraped her knee, looked down at the blood, and calmly said, “Like Daddy, because he bleeds.” Then there was the day she spotted a cockroach flipped upside down, thrashing helplessly on the floor. Without hesitation,…

Delaying the start of immunosuppressive treatment in adults diagnosed with acquired hemophilia A who are receiving Hemlibra (emicizumab-kxwh) to prevent bleeding may reduce the risk of infections and extend survival, a clinical study found. Patients in the Phase 2 study (NCT04188639 received Hemlibra for 12 weeks while immunosuppression…

Every person is a walking compilation of stories that make up their book of life. As the mother of two sons with severe hemophilia, I have the privilege of watching their books develop. One of the most anxiety-filled chapters was when they first went to day care. Memories of…

Well, it was bound to happen sometime. My first ambulance ride. I was awakened suddenly from a deep sleep at 2 a.m., my upper back in excruciating pain. A 10 out of 10. I waited a few seconds, trying to take a deep breath, to see if the pain would…

When I walked into the LadyBugs conference in Salt Lake City last weekend, the energy was immediate: part reunion, part rally, and part safe space for women who understand life with a bleeding disorder. Hosted by the CHES Foundation, LadyBugs is a program for women ages 16 and older who…

Switching from standard half-life factor replacement therapies to the extended half-life treatment Elocta (efmoroctocog alfa) improves bleed control among people with hemophilia A. That’s according to an analysis of data from the real-world A-SURE study (NCT02976753), which showed that switching to Elocta, sold as Eloctate in the…

A single dose of Roctavian (valoctocogene roxaparvovec-rvox), a gene therapy for severe hemophilia A from BioMarin Pharmaceutical, maintains factor VIII (FVIII) levels at near-normal or normal levels for up to five years, with most patients staying off prophylaxis, or preventive treatment. These lasting benefits were observed in GENEr8-1…

To say my youngest son, Caeleb, is excited to start his second year at the University of New Mexico is an understatement. He lived at home during his freshman year, but next month, he’ll move into a dormitory. He can’t wait to spread his wings and live on his own(ish).