There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (antihemophilic factor/von Willebrand factor complex [human]), a plasma-derived therapy. This medication is more than just a vial;…
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My day started like every other day — at my desk, sorting through emails inviting me to attend meetings on church activities and other community opportunities. But then, my phone lit up with a message from my son Julian, encouraging me to open a link to a song he recorded…
In a society where reality television is king, passing judgment is easier than ever. Contestants in competitions such as “Dancing with the Stars” and “American Idol” are eager to hear the judges’ remarks in hopes of advancing to the next round. On shows like “Judge Judy,” litigants demand arbitration to…
The pool was loud in the way summer pools usually are — whistles, splashes, kids calling out to each other, coaches raising their voices above the noise, parents chatting on the sidelines. Our 7-year-old daughter stood at the edge, waiting for her instructor to guide her into the Olympic-sized pool.
Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens before I even leave my closet. What am I doing today? How far will I be walking? Will I be sitting…
Thirteen years ago, when my youngest son, Caeleb, was 7, he suffered a horrible spontaneous internal bleeding episode in his right knee, a complication of hemophilia. His right knee and ankle were target joints, meaning they were susceptible to frequent bleeding. This proved to be one of…
Easter Sunday was wonderful. The pipe organ at our church hadn’t worked in four years, but thanks to generous donors, it was finally restored. We revealed it on Easter with a brass quintet and choir, and the music was truly beautiful. As a classically trained oboist, I am deeply…
A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan. But as I read through it, I couldn’t…
In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combination of hemophilia B and von Willebrand disease. It’s broad enough to be understood, and…
My oldest son, Julian, caught me completely off guard recently. “Dad,” he said when I answered his call. “When the hematologist and her medical team entered the hospital room to tell you and Mom that I had hemophilia, what did you need for them to say to help you…
