While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…

Emergency preparedness is a broad and crucial topic, especially for those of us in the bleeding disorders community. With natural disasters becoming more frequent and severe across the U.S. — think of the Los Angeles wildfires — planning ahead is more important than ever. As a Florida resident, I’ve experienced…

Health Canada has expanded its approval of Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in hemophilia B to patients under age 18. The therapy, developed and marketed by Novo Nordisk, is now available to all hemophilia B patients as a preventive (prophylactic)…

Tomorrow is a long-awaited milestone in my pregnancy. I am scheduled to have an ultrasound, during which we will finally learn our child’s definite sex. My OB-GYN will also check for structural anomalies. I feel excited and nervous. All my husband and I want is a healthy child. But with…

One of the most frequent questions I hear is, “How do I find community?” The question resonates deeply with me because, like many others in the bleeding disorders community, I’ve struggled with feeling isolated and misunderstood. Finding a sense of belonging has been a journey, one filled with trial…

When people think about hemophilia, they usually think of joint, muscle, and sometimes soft-tissue bleeds. But one of the most dangerous complications occurs elsewhere: the brain. My husband, Jared, had a brain bleed as a child. It’s the kind of event people often imagine as…

I recently hosted a retreat for United Methodist deacons from New Mexico and Arizona, where we gathered to share our ministries, develop new relationships, and connect. Deacons are called to serve beyond the church walls, and I’m always amazed at the work we do in the world. At the retreat,…

My youngest son, Caeleb, begins middle school this year. He is super-excited about starting the sixth grade, but I am not nearly as enthusiastic. He’s already thinking about new friends, changing classes, and joining the Pokémon club. I am worried about bullies in the hallways, his lack of…

I have struggled with anxiety and depression since my early 20s. Fortunately, my mental health is in excellent shape thanks to medications and therapy. These two aspects of care are necessary for me to be the best person I can be, not only for my family but also for…

In an instant, things can change and redefine who we are. One minute life appears to take us down one road, and then we encounter something that brings us toward an entirely different destination. Whatever happens, we know that life will never be the same again, and our entire perspective…