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Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first thing we think of when we plan for day-to-day life with hemophilia. Preventing and treating bleeds…

When I was a child, I learned a song called “Greatest Love of All.” I’ve always found the first two lines particularly striking: “I believe the children are our future/ Teach them well and let them lead the way.” Now that I am a mom to my very own spunky…

Back in Texas in good ol’ 1996, when my first son came into the world, a nice, well put-together doctor entered our room. He introduced himself as Dr. Connelly, the pediatrician on call. He appeared very polite and had an effortless bedside manner. He let us know that our…

My adult son, Julian, does a wonderful job managing his hemophilia. He infuses twice a week per doctor’s orders, and if he has a breakthrough bleed, he treats as needed. Julian is extremely fortunate, because throughout his 24 years, hemophilia has not been the center of his life. His journey…

It just slipped out that one time. I wasn’t even thinking. My husband, Jared, and I had been talking casually about how some of his friends had taken up cycling, when I made the offhand comment that he might be able to do the same. After all, I said, other…

At every annual event sponsored by the National Hemophilia Foundation, a particular room is dedicated to remembering those who died from complications of hemophilia. In the 1980s and early ’90s, many people lost loved ones during a period that became known as the “hemophilia holocaust.” A staggering number…

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to tell. I recently led a workshop to help people in the bleeding disorders community craft their “elevator pitches,” which…

My mom asked me last week if I ever curse my dad for giving me hemophilia. It was a fair question. Recently, I had a bad joint bleed in my shoulder. And by that, I mean a really painful shoulder bleed. A wake-up-at-3-a.m.-in-excruciating-pain shoulder bleed.

My husband, Jared, and I were recently talking about Rare Disease Day, which falls on Feb. 28. As a person with hemophilia, Jared has faith in its purpose of raising awareness about rare health conditions and the people who live with them. Having dabbled in hemophilia and mental health…

When my first son was 6 months old, we experienced our initial reception into the world of hemophilia. Until that point, his bleeding disorder had not reared its ugly head. This was his first internal bleed into a joint (his ankle), and we prepared to find a vein to…