Note: This column describes the author’s own experiences with getting three vaccines at once. Not everyone will have the same response to treatment.   I consider myself quite adept at managing my bleeding disorders, von Willebrand disease and hemophilia B. Decades of experience have taught me how to…

January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite. Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels…

Soon, I’ll leave sunny Florida for the northern tundra of Madison, Wisconsin, and Schaumburg, Illinois, to be with my family for Christmas. As I prepare to spend time with my loved ones, I can’t help but appreciate the significance of this trip: It marks my first Christmas journey without…

My husband and I have always found ourselves living in between places. The first apartment we moved to was in a hub between three cities. Now we live on the border between two cities. Just a few streets away from us is a sign that says, “Thank…

Barry Haarde was a tough man to stop. Despite a decades-long battle with HIV and a near-death brush with hepatitis C, he made history in 2012 as the first person with hemophilia to bike across the country. In fact, he spent the last six years of his life bicycling…

I’ve written before about not seeing myself as a caregiver in the traditional sense. For us caregivers, hemophilia doesn’t usually demand round-the-clock care. My husband, Jared, manages his condition independently. He infuses. He monitors his body. He makes decisions about risk and rest. My role on most days is…

Last year was difficult for my mighty warrior Caeleb. Moving to a new school in a town where everyone knows everyone is not something you wish for as an incoming seventh-grader. This year was better until I discovered that a couple of boys were bullying Caeleb and he did not…

Two new gene therapy vectors designed for liver diseases show promising effects in a mouse model of hemophilia B, according to a recent study. The study, “Adeno-associated virus serotype 2 capsid variants for improved liver-directed gene therapy,” was published in Hepatology. Hemophilia B is caused…

I do not give up. It’s in my DNA to find answers to questions, even if it takes a long time. I hope my sons, who both have hemophilia, inherit this characteristic of seeking out answers. I pray they have the strength to never accept defeat. I tell them…

My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit in and make friends. He comes home most days with a tale of mistreatment or insensitive comments directed at him. It breaks my heart,…