There is a moment in every person’s journey when they realize that their story is messy, complicated, and imperfect — and it holds more power than they ever imagined. Living with a bleeding disorder often means navigating a world that doesn’t fully understand what we face. We can feel isolated…
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Life can change in a moment. Sometimes, all it takes is a phone call — that a loved one has passed away, that you’ve lost your job, or that you are free from cancer. Those moments often create core memories — highly emotional, significant experiences that have a lasting…
When people think about hemophilia, they usually think of joint, muscle, and sometimes soft-tissue bleeds. But one of the most dangerous complications occurs elsewhere: the brain. My husband, Jared, had a brain bleed as a child. It’s the kind of event people often imagine as…
It started with a refrigerator leaking water out of the bottom and a YouTube video that made it seem like an easy fix. You know the kind: “Just remove the freezer door.” “Melt the ice with a hair dryer.” “You’ve got this.” It didn’t seem like a big deal, but…
My youngest son, Caeleb, is home from college for spring break. He has no big trips to far-off hot spots planned. Instead, he’s in his room, enjoying the comfort of his bed. Our fur babies, Laggie and Hildie, enjoy spending time with their favorite human. Caeleb’s love for art and…
The sound of a tape gun gives me anxiety. There’s the quick pull of the tape from the roll, followed by its crinkling as it’s pressed onto the box’s flaps. The serrated blade bites down and tears the tape cleanly, the cardboard often giving a faint, hollow thud beneath the…
“Today I am thankful for warm showers and a safe place to live. Dog kisses, even when I am grumpy, make me thankful. I am thankful I did not come unglued when I was frustrated at work.” In November 2020, as part of a women’s hemophilia retreat sponsored by…
Recently, news about a deal on airfare started making the rounds in our group chats. Here in the Philippines, these sales tend to appear when people start thinking about summer travel. Cheap fares, beautiful destinations, and the thrill of booking something spontaneous can be hard to resist. Some of my…
Living with hemophilia B and von Willebrand disease means getting used to things that most people would consider unusual. Bruises appear without explanation. Minor injuries take longer to heal. A routine dental visit requires more planning than most people would ever imagine. And sometimes, the body sends…
Not long after I started working at the Hemophilia Federation of America (HFA), the organization hosted a congressional reception to help raise awareness about bleeding disorders. The bleeding disorders community must maintain its visibility among government decision-makers who help address important issues, such as ensuring our access to the…
