As summer begins, the MacDonald family continues a great tradition of visiting a local museum every Friday. We started at least 12 years ago when my oldest son, Julian, graduated middle school. Caeleb, my youngest boy, continues our special ritual and looks forward to exploring the many things that…

My husband and I are both United Methodist clergy, so our children are called PKs (pastors’ kids). Some PKs earn reputations for misbehaving, giving their parents plenty of gray hairs. Other PKs are kind and considerate, attend youth groups and Bible studies, and are seen as model children. My sons…

Children and young adults with hemophilia A and hemophilia B have several behavioral problems, ranging from depression and anxiety to aggressive behaviors, a small study suggests. Age, disease severity, and joint disease duration were found to be significantly correlated with several of these problems. The findings were reported in the…

My husband, Jared, and I work to earn a living. We freelance for various clients and run a business — though due to the state of the economy here in the Philippines, business isn’t as profitable as it used to be. In between jobs, we dedicate a significant chunk of…

Preventive treatment with a low dose of factor replacement therapy in children with hemophilia A led to sufficient levels of the clotting factor in most patients, but the time in which it did so varied, a recent study reported. Researchers noted that while findings support the use of this…

The U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to efanesoctocog alfa, an experimental replacement therapy for hemophilia A designed for once-weekly dosing. This designation is given by the FDA to help speed the development and review of treatments for serious or life-threatening conditions. Specifically,…

Last night, I dreamed that I attended a doctor appointment for my wife, Cazandra. It was a follow-up to discuss lab results requested at the initial meeting. The doctor entered the room and shared treatment strategies. She told Cazandra that she wanted to try a new medication to help…

A single dose of the experimental gene therapy Roctavian (valoctocogene roxaparvovec) prevents bleeds and the need for preventive treatment, or prophylaxis, for up to six years in men with severe hemophilia A, according to updated data from a Phase 1/2 trial. “With every year of observation in this…

Caeleb, the child doctors said I’d never have, has changed my life. He is 16 and thinking about his future. That may sound like a normal thing for a 16-year-old, but I was unsure about his future with his hemophilia A. His life with this disease has been…

A simple tonsillectomy led to my eventual diagnosis of hemophilia B and von Willebrand disease. Without a family history, a bleeding disorder wasn’t on my family’s or pediatrician’s radar. I had to almost bleed to death for a bleeding disorder to be suspected. Terror of the tonsils The…