Through my journey of being an advocate for two sons with hemophilia, I’ve continued to learn life lessons that enrich my soul and make me a better person. While it’s true that raising Julian and Caeleb involved the heavy burden of managing their bleeding disorders, I’ve discovered…

My husband, Jared, enjoys cooking. As I write this, a pot of gumbo simmers on the stove. Its strong aroma drifts throughout our open-layout house and toward my work desk. My stomach churns in excitement. It’s his first time making this dish, but as with nearly every recipe…

The incidence of acquired hemophilia A (AHA) was nearly twice as high in Hong Kong than in Caucasian populations previously observed, a study found. Patients in Hong Kong tended to be older and have co-existing medical conditions, with age being a significant predictor of mortality and failure to achieve…

Brazilian hemophilia A patients who are 19 or older had significantly higher median care costs per patient per year than younger patients, a study reported. The study also revealed an increase in median costs for patients with more severe disease — that is, those who have less than 1%…

I recently picked up a fascinating book, “The Courage to Be Disliked,” by Ichiro Kishimi and Fumitake Koga. The book dives into the philosophy of Alfred Adler, a pioneering figure in individual psychology. Adler’s ideas stand in contrast to the older, trauma-focused theories of…

A few weeks ago, my oldest son, Julian, called me from the Blue Ridge Mountains in North Carolina and informed me that he had throbbing pain in one of his teeth. He immediately went to a nearby dentist and got news he didn’t want to hear: The tooth…

One of my favorite movies is “Galaxy Quest,” a comedy that parodies and pays homage to science fiction films and TV. In it, the cast members of a cult series much like “Star Trek” are drawn into an interstellar conflict by real aliens who think the series is…

Prophylactic treatment for hemophilia can help people with the disease avoid unemployment due to disability, a study reports. Hemophilia has a negative effect on a person’s employability. A 2022 global report by the World Federation of Hemophilia indicates about 18% of hemophilia patients see their employment status impacted…

Navigating life with hemophilia in the Philippines presents unique and daunting challenges. The financial burden of treatment is one of the most significant hurdles hemophiliacs face. A 1,000-unit vial of factor IX costs up to 22,000 Philippine pesos (about $377), yet the minimum monthly wage is…

A 39-year-old man from Arizona became the first patient in Nevada to receive Hemgenix (etranacogene dezaparvovec), the first gene therapy to be approved for hemophilia B. The infusion was administered at the Cure 4 The Kids Foundation, under the supervision of Aimee Foord, director of the foundation’s bleeding…