The bleeding disorders community can relate to March Madness

It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders,…

Celebrating stories from the bleeding disorders community

Beyond medical complexities, bleeding disorders illuminate inspiring stories of resilience, courage, and community strength. When we openly share our experiences, we educate others, combat stigma, and promote inclusion. Bleeding Disorders Awareness Month in March is an essential opportunity to highlight the realities faced by those living with hemophilia,…

It’s time for women with bleeding disorders to be seen

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…

One Drop’s impact on those with ultrarare bleeding disorders

This month, I attended One Drop, a “rare bleeding disorders consortium” hosted by Comprehensive Health Education Services (CHES) in Tampa, Florida. The event supported individuals and families with deficiencies of factor I, II, V, VII, X, XI, XIII as well as rare platelet disorders, such as Glanzmann thrombasthenia. Janet Brewer,…