The recent Rare Blood Disease Summit sponsored by Genentech highlighted a critical perspective pertinent to me: “Mild is the most dangerous word in hemophilia.” I wholeheartedly agree with this statement as a person with mild hemophilia B and von Willebrand disease. Mild hemophilia is distinguished…
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Last week, I attended a clergy retreat at Sacramento Camp & Conference Center, in the southern mountains of New Mexico. We experienced clear blue skies and mild temperatures, as well as moments of self-reflection. One day I hiked to the top of a mountain, standing in awe of…
A recent family vacation to the beautiful island of Bohol in the Philippines was filled with unforgettable moments. We climbed steep steps to take in the mesmerizing view of the Chocolate Hills, crossed swaying twin bridges, and visited popular tourist spots like the Tarsier Sanctuary and Bohol Bee…
In the wake of my mother’s tragic passing in February and the havoc wreaked by Hurricane Ian last year, my living space in Florida has undergone a profound transformation. My mother and I had always depended on a cleaning person to keep our condominium tidy. Those services have been…
I’m part of a clergy group that meets monthly and has seven members from several denominations. Over the years, it’s been a safe place to discuss any issue, from church to home. We formed a covenant with one another to keep our conversations confidential. When sharing with my colleagues,…
Alaska, Antarctica, and Greenland have something in common: They’re a few of the places where glaciers are present. A glacier is a large, slow-moving mass of ice and snow that forms over an extended period in areas where more snow accumulates during the winter than melts during the summer. Many…
I wish more people would see my husband, Jared, the way our daughter sees him. In her eyes, he’s a revered figure, just short of a cape-wearing superhero. Now nearly 5, she’s at an age when most little girls demonstrate a special, almost romantic, adoration for their daddies. But perhaps…
Physical therapy (PT) plays a crucial role in the management of hemophilia. While it may seem counterintuitive for people with bleeding disorders to benefit from physical activity, PT is essential for overall joint health and pain management. However, my recent journey tells a slightly different tale. It’s a story…
I first attended a Bleeding Disorders Conference in October 1998. The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) offered the event during Halloween week in New Orleans. My wife, Cazandra; my oldest son, Julian; and my mother, Ruby, entered our hotel with me, not sure…
I’m grieving for my youngest son, Caeleb, a high school senior. Caeleb’s academic pursuits haven’t been successful, according to the world. Society revels in straight A’s, being in the top 10% of a graduating class, and receiving full-ride scholarships to college. If a student isn’t meeting these expectations and doesn’t…
Recent Posts
- Why progress in von Willebrand disease treatment finally feels real
- Global survey finds many women with hemophilia face diagnostic gaps
- Learning how to infuse factor gave my family freedom, part 1
- Guest Voice: My sons with hemophilia are blessings after a devastating loss
- Love shows up to navigate hemophilia, distance, and family bonds