Women like me often wonder how the hemophilia community has overlooked us for so long. The stories of women labeled as mere “carriers” — despite experiencing life-threatening bleeding episodes — are endless. For decades, we’ve lived with symptoms that disrupt our lives, yet we were dismissed, misdiagnosed, or told…

An unfortunate incident recently made waves on social media here in the Philippines, where I live, when a restaurant chain posted a dismissive, sarcastic message about fake disability IDs. The poster questioned whether 30% of its customers were truly disabled and mocked those with invisible disabilities. It also reduced…

Note: This column describes the author’s own experiences with getting three vaccines at once. Not everyone will have the same response to treatment.   I consider myself quite adept at managing my bleeding disorders, von Willebrand disease and hemophilia B. Decades of experience have taught me how to…

An experimental gene therapy using modified blood stem cells helped five adults with severe hemophilia A attain therapeutic levels of clotting factor VIII (FVIII) to prevent and control bleeding, according to a small first-in-human study. Over the course of the Phase 1 clinical study (NCT05265767), none of the…

As my family started contemplating the people and routines we’ll leave behind in our upcoming job change and move, my thoughts turned to one routine in particular: For over 12 years, I’ve visited my therapist regularly. Her support was a beacon of hope in some of the darkest times;…

I love to watch hummingbirds. They’re lightning-fast as they move from flower to flower, feasting on nectar and insects. When they come to the feeder outside my window, their chirps and hums are different from those of other birds. I’m intrigued that the hummingbirds go into a state…

Some people get birthday blues. Jared got a birthday bruise. So we found ourselves heading to a café to get some birthday brews. — A rhyme by yours truly My husband, Jared, celebrated his 32nd birthday on Jan. 13. A couple of days before that, he had a run-in with…

Emergency preparedness is a broad and crucial topic, especially for those of us in the bleeding disorders community. With natural disasters becoming more frequent and severe across the U.S. — think of the Los Angeles wildfires — planning ahead is more important than ever. As a Florida resident, I’ve experienced…

When our oldest son, Julian, was about 6 years old, the hemophilia treatment center (HTC) in Houston invited my wife, Cazandra, and me to participate in a program that changed our lives. It was called Parents Empowering Parents, better known as PEP in the bleeding disorders community. Created by social…

I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon. Driving around town, I search for a quiet parking lot with good phone reception. Using a…