If I could go back in time, I would learn to control my anger sooner. I didn’t say unkind things or become physical, but my voice did get loud enough to frighten my children. After I regained my senses, I would punish myself for the panic I saw in…
Columns
I went on a date with my husband, Joe, when I was a 19-year-old college freshman. Thirty-eight years later, we’re still together. Like most couples, we had our share of challenges early on, but we made it through. Building a life together at a young age isn’t easy, but…
Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier. It wasn’t a serious family meeting. There was no carefully prepared speech. She was stimming and half-playing while we talked, and at times I wasn’t entirely sure how much of the…
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…
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,…
