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…
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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,…
I recently had the honor of attending the National Bleeding Disorders Foundation’s (NBDF) Bleeding Disorders Conference in Aurora, Colorado. I’m grateful for a travel grant I received from the NBDF that made it possible for me to attend. The conference was a fabulous and energizing mixture of connecting with…
Ethan Ash, a member of the Bionews team (actually, its executive vice president of business development), called me over to tell me it was my turn to hit the golf ball. He interrupted me as I was talking with Erica Millman, another member of our Bionews team and the…
The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?” That question hit me. As…
The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…
Recent Posts
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- Lower-dose gene therapy effective in severe hemophilia A: Study
- Our family’s travel planning looks a little different these days
- Embracing the strange signals that come with a bleeding disorder
- Who am I? A woman with a bleeding disorder. See me. Believe me. Treat me.