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When I traveled with HAPLOS, the Hemophilia Philippines Foundation, about six years ago to visit families with bleeding disorders in rural provinces, I expected hardship. What I didn’t expect was how drastically the same diagnosis could play out depending on where and how you lived. My husband, Jared,…

When you live with a bleeding disorder, you quickly learn that the words people use matter almost as much as the treatments themselves. I’ve been called a “carrier” and a “hemophiliac,” and told that my condition was “mild” or “moderate,” as if these words fully described the challenges…

My wife, Cazandra, and I enjoy speaking on topics critical to the bleeding disorders community, as both of our adult sons live with hemophilia. A few weeks ago, we had the chance to lead a seminar called “Telling Our Stories” at the National Bleeding Disorders Foundation’s (NBDF) annual…

Over the years, I’ve expressed my creative side in ways I never imagined possible. The space intended to be the formal living room in my home is, instead, my quilt room. Sewing machines (yes, plural), fabric, colored markers, pens in Mason jars, paper for greeting cards, and brightly colored yarn…

Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned. But for me, the…

When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia. The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with…

When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…

Last week, my wife, Cazandra, and I attended the National Bleeding Disorders Foundation’s (NBDF) annual symposium. As parents of two adult sons who have severe hemophilia A, or factor VIII deficiency, we’re familiar with the lay of the land. The conference provided a space for us to discover…

I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…

Kids have a way of flattening the extraordinary into the ordinary. My 6-year-old daughter once scraped her knee, looked down at the blood, and calmly said, “Like Daddy, because he bleeds.” Then there was the day she spotted a cockroach flipped upside down, thrashing helplessly on the floor. Without hesitation,…