As the carer of my husband, Jared, who has hemophilia B and a seizure disorder, I’ve realized the importance of communication, understanding, and empathy. Focusing on these values helps us mature in our roles while balancing personal challenges, which for me include being a caregiver, mother, and a person…

During my teenage years, I vividly recall attempting to convey the severity of my menstrual bleeding to a male hematologist. I described my bleeding by giving examples of the products I used, such as “superplus tampons” and “overnight maxi pads.” He couldn’t relate. In a somewhat perplexed tone,…

The National Hemophilia Foundation (NHF) has changed its name to the National Bleeding Disorders Foundation (NBDF) to reflect its support for people with inheritable blood and bleeding disorders other than hemophilia. The new name includes a new visual identity and logo. The foundation also unveiled a new tagline…

In middle school, I faced bullies just about every day. I often experienced physical violence during the three years I attended what was then called Burbank Junior High School in Houston. The beatings occurred so frequently that my speech teacher allowed me to stay in her class and…

I’ve previously written about fellow Floridian Kayla Mack, a woman in her 50s who has Type 3 von Willebrand disease (VWD). Her severe bleeding disorder is similar to those who deal with severe hemophilia, as her blood clotting factor VIII levels are nearly negligible. Her von…

More bleeding episodes may mean a lower quality of life and less productivity at work for men with hemophilia A living in Europe, according to an analysis of data from the CHESS II retrospective study. The analysis, “The impact of bleeding event frequency on health-related quality of life…

When it came time to teach my oldest son, Julian, how to shave, I chickened out. The thought of putting a razor blade on his face terrified me. I lived with an unsupported fear that I’d instruct him poorly and a cut might unleash a river of blood. I…

My husband, Jared, and I were recently captivated by the valedictory of Val Llamelo, the 2023 top graduate of the University of the Philippines. His address garnered widespread attention on social media for its criticism of “inspiration” and the societal issues it masks. These points resonated deeply with…

Last Friday, my youngest son, Caeleb, finished the first week of his final year in high school. He’s a mighty senior ready to conquer the world with his incredible artistic abilities. Growing up, my son experienced hemophilia-related medical issues that most people could never imagine. I think of his…

A small percentage of young people with hemophilia A who are on preventive treatment with Hemlibra (emicizumab) experience severe muscle bleeds that require prolonged factor replacement therapy. These are the findings of a real-world, multicenter study in the U.S. which also show that most of these severe muscle…