There’s a moment I’ve heard described so many times that it feels like a shared memory. A woman finally learns the name of the bleeding disorder she’s carried for so many years without answers. Perhaps it’s von Willebrand disease (VWD), or maybe it’s hemophilia. Then, the doctor’s appointment…
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More than 30 years ago, my wife, Cazandra, and I began our work in the bleeding disorders community after our oldest son, Julian, was diagnosed with hemophilia. Since then, we have served on the boards of several chapters and presented workshops across the country. We love the work because…
As a classically trained oboist, I enjoy attending the symphony, except when Wagner is on the program. I like to get there early and watch what happens before the performance starts. Musicians come on stage one by one, settle in, adjust their sheet music, and sometimes practice.
Recently, I posed a question to Hemophilia News Today readers on social media for Disability Pride Month: “Do you consider hemophilia to be a disability? Yes, no, or somewhere in between?” The question prompted a wide-ranging public discussion. Some considered hemophilia to be a disability because of its…
Note: This column describes the author’s experiences with BeneFix (coagulation factor IX). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I expected factor to help a bleed. I didn’t expect it to change what my back could do. For months,…
Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always the same: I am submerged beneath a large body of water, fighting to reach the surface so I can breathe.
Back-to-school season has always been one of my favorite times of the year. Walking through aisles full of pencils, erasers, spiral notebooks, and colored pens takes me back to my elementary school days. I especially loved choosing a big pack of construction paper. Opening a new package, breathing in the…
The scream echoed through our house, loud enough to rattle the windows. For a moment, I wondered what the neighbors must have thought. My husband and I were walking up the stairs when he accidentally scraped his hand against the railing. It wasn’t a particularly hard hit. Most people probably…
Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves. As someone with hemophilia, I felt this way. Strongly. Until last week. As I’ve mentioned…
Most mornings, before the day can get its hands on me, I do exercises for my spine. They are not impressive. No one would film them. They are slow, deliberate movements on a mat, the kind of thing that looks like nothing and costs more than it looks. Bracing. Holding.
