Columns

Life when you’re married to someone with severe hemophilia B often feels unpredictable. One moment, everything seems fine, and the next, a spontaneous bleed or unexpected health concern throws everything into chaos. Over the years, I’ve learned to stay on high alert, always ready to shift gears at a…

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,…

Last weekend was a testament to the importance of community support for those who struggle with bleeding disorders. As the vice president of Sangre de Oro, the New Mexico chapter of the National Bleeding Disorders Foundation (NBDF), I’ve witnessed the challenges our organization has faced over the years.

“It’s been too long.” “Oh my goodness, your kids have grown!” “It’s been forever since we’ve seen each other.” These sentiments resonated as members of Sangre de Oro, the Bleeding Disorder Foundation of New Mexico, gathered for Family Education Weekend March 21-23 in Albuquerque. While many chapters around the…

Tracking factor VIII (FVIII) infusions can be a drag! When I started infusing it regularly to prevent bleeds caused by my hemophilia, I searched for an app to help. For hemophilia patients, it’s important for our medical providers to have a record of our bleeds and the treatment…

I made it to the Manila Pen Show here in the Philippines, and I couldn’t be happier! There’s something deeply satisfying about being in a space filled with fellow enthusiasts, surrounded by exquisite writing instruments and vibrant bottles of ink. For me, collecting fountain pens is more than just a…

There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when…

When my youngest son, Caeleb, was born over 19 years ago, my wife and I found out that he had hemophilia before leaving the hospital. Devastated, we could not begin to tell anyone how we felt about the diagnosis. I remembered our struggles raising my oldest son, Julian, now…

What do developmental disabilities, French bread, endometriosis, nutrition, English tourism, and bleeding disorders have in common? They all claim March — or a select day or week during the month — for awareness. Organizations dedicate this time to educating the public through local and national gatherings and social media campaigns.

“As a woman with hemophilia, what situations cause you anxiety?” a friend recently asked me. What a great question! I loved that she added “as a woman” because women with hemophilia can experience stressors that men with hemophilia don’t. Many anxiety-provoking circumstances affect men and women with hemophilia…