When I look back on the things my husband, Jared, and I did in our 20s, I sometimes wonder how we managed to get through them without more emotional or physical scars. We were young, impulsive, and convinced that nothing too serious could happen as long as we “managed things…
In my work as a hospice chaplain, I take the same routes when I drive to patients’ homes, assisted living facilities, or hospitals. Without thinking about changing lanes or adjusting my speed, my mind settles into autopilot, and I often arrive at my destination without realizing how far I’ve…
Dear Santa, It’s that time of year again: when the lights twinkle, music fills the air, and I start making my list. But this year, I’m not wishing for things you can wrap. These wishes are for the hemophilia and bleeding disorders community — the people I love and…
When you live with a bleeding disorder, you get used to explaining yourself. You learn to walk into an emergency room ready with a treatment letter and a mental script of your medical history. You learn to minimize pain, explain bruises, fight for treatment, and reassure medical professionals that, yes,…
I rumbled around the house one evening, wrapped in my favorite oversized sweatshirt and cozy socks, the comfort like a warm embrace. I left my latest craft, hands marked with thread and bits of fabric, to refill my iced tea. As I made my way to the kitchen, I left…
It was the first rain of the season in 1978, and I was in kindergarten. Growing up in a low-income household meant that we were not always prepared, even when my parents wanted to be. I felt fortunate that my mom had a solution to keep my feet dry! She…
I recently spent an afternoon with a group of parents raising young adults with hemophilia. They were part of a newer generation, people who grew up with a little more information, a little more community support, and slightly more medical options than what my husband, Jared, had access…
Hemlibra (emicizumab-kxwh) safely supports joint health in children with hemophilia A without inhibitors through three years of treatment, according to interim data from a post-marketing study in Japan. The ongoing study, AOZORA (jRCT1080224629), is evaluating the long-term safety of Hemlibra and its impact on joint health in children ages…
Hemophilia C is a rare bleeding disorder that affects the blood’s ability to clot.
Moving is challenging. Moving means packing, having to decide what to keep and what not to keep, learning a new place, having to find a new grocery store, a new hair and nail salon, a new healthcare provider. Doing all that this time offered an opportunity to remember and…
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