Many years ago, my family attended the National Bleeding Disorders Foundation’s Bleeding Disorders Conference. My youngest son, Caeleb, was 8 at the time. Due to his hemophilia, he experienced numerous internal bleeding episodes as a child, making it impossible for him to walk long distances. We brought a wheelchair…
Columns
Growing up in Houston, I remember the now-defunct amusement park AstroWorld being a significant part of summer for many people. Its star attraction was the Texas Cyclone, a nearly 100-foot-tall wooden roller coaster whose steep drops and quick turns could make your stomach do somersaults. If…
Due to my husband Jared’s severe hemophilia B, we keep a small, personal supply of factor replacement therapy in our refrigerator that typically is enough to cover one bleeding emergency. This isn’t a small detail for families like ours who live in the Philippines, where access to factor products…
My Peloton bike doesn’t go anywhere. That’s the whole point. It sits in my bedroom, stationary, pedals turning against resistance I set myself, wheels spinning in place while the rest of the world stays exactly where it is. No cross-country route, no open road, no wind at my back. Just…
My son Caeleb has hemophilia, and when he was in high school, he dealt with a lot of chronic pain, the result of continuous bleeding episodes into his right knee and ankle. He missed many days of school because the pain was so great that he couldn’t focus. I…
My son Caeleb recently had his wisdom teeth removed. Caeleb has severe hemophilia A with an inhibitor, but hemophilia hasn’t been the main focus in his life for years. Nevertheless, before the surgery, he called the hemophilia treatment center (HTC) to ask about what steps to…
Note: This column describes the author’s and his sons’ experiences with Hemlibra (emicizumab-KXWH). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The dog days of summer can lull you into a false sense of security. There’s not much going on,…
Lately, I’ve come across more conversations about what it means to live independently with a bleeding disorder. They usually focus on big milestones: moving out, going to college, starting a career, or taking charge of one’s own healthcare. It made me curious, especially now that my husband, Jared, and I…
I was scrolling Facebook last week when a post stopped me cold. It was from Ashley Hall, a mom I’ve come to know in this community. She has two boys with hemophilia A, one of whom, Maverick, also has an inhibitor. An inhibitor develops when the immune system…
My oldest son, Julian, is a working actor in a touring production. For this show, he is trained to perform both male lead roles. Over the last six months, he performed one role, and he recently began the other role in a new city. Even though he knows the script…
