Emergency preparedness is a broad and crucial topic, especially for those of us in the bleeding disorders community. With natural disasters becoming more frequent and severe across the U.S. — think of the Los Angeles wildfires — planning ahead is more important than ever. As a Florida resident, I’ve experienced…
Columns
When our oldest son, Julian, was about 6 years old, the hemophilia treatment center (HTC) in Houston invited my wife, Cazandra, and me to participate in a program that changed our lives. It was called Parents Empowering Parents, better known as PEP in the bleeding disorders community. Created by social…
I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon. Driving around town, I search for a quiet parking lot with good phone reception. Using a…
My husband, Jared, often spent his childhood navigating two very different worlds. In one, he was a regular kid with big dreams and boundless imagination. In the other, he was a young boy living with severe hemophilia B, which meant being confined to hospital beds for weeks while receiving…
I don’t recall when I met Debbie Murray, but I remember the impression she left on me. Her frustration with the long and challenging journey to a proper diagnosis and effective treatment of her hemophilia was unmistakable. Debbie, 56, resides in Norwood, a village in the northernmost part of…
I’m a pastor in the United Methodist Church, where the one constant we share is change. In our denomination, pastors serve on an itinerant system, which means that the cabinet (the bishop plus the district superintendents) chooses which pastors will serve in different locations. As a result, I’ll…
When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is really unusual. It’s rare for women to have hemophilia!” This ubiquitous misconception is the bane of every female hemophiliac’s existence. It often stands in the way of women and…
When my husband, Jared, was younger, he was “the sick child.” With severe hemophilia B and a seizure disorder, he stood out like a sore thumb — or a rare gem. In any case, he was distinct as the child who required special accommodations at school or who missed…
I have to admit, I was captivated by Hemophilia News Today‘s Facebook page during the final days of December, eagerly following its countdown of the year’s top 10 most-read columns. It was an incredible honor to see that my columns secured eight of those 10 spots. Each one…
On Monday, my youngest son, Caeleb, will begin his second semester as a freshman at the University of New Mexico. Last night he asked me if I had a few minutes to talk. I might not be the sharpest tool in the shed, but when my 18-year-old asks outright for…
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