Easter Sunday was wonderful. The pipe organ at our church hadn’t worked in four years, but thanks to generous donors, it was finally restored. We revealed it on Easter with a brass quintet and choir, and the music was truly beautiful. As a classically trained oboist, I am deeply…
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A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan. But as I read through it, I couldn’t…
In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combination of hemophilia B and von Willebrand disease. It’s broad enough to be understood, and…
My oldest son, Julian, caught me completely off guard recently. “Dad,” he said when I answered his call. “When the hematologist and her medical team entered the hospital room to tell you and Mom that I had hemophilia, what did you need for them to say to help you…
Hemophilia has required me to make some major adaptations in my life. One of the biggest came when I was younger and needed to start infusing medication on my own. At first, doubt and fear crept in. Can I really do this? Is it going to hurt? But…
Every week, I lead the pastoral prayer at church. It’s a moment to share what brings us joy and what weighs on our hearts as a congregation and a community. I always pray for the unhoused, the hungry, the grieving, and our country. But there’s one group I often mention…
I have been applying to graduate programs that would incorporate more spirituality into my advocacy work with the hemophilia community and allow me to explore how faith and spirituality help people cope with bleeding disorders. Among them was a dream doctoral program for working professionals that offered students scholarships…
One of the stranger skills I’ve developed in my marriage to someone with hemophilia isn’t medical — it’s domestic. It’s the art of removing blood stains. To be fair, I already had some experience dealing with blood simply by being a female person who menstruates. But when you’re married…
I read this week about Bleeding.org LIVE!, a national livestream taking place at 4 p.m. Pacific time on March 28, and I felt something I don’t always feel when it comes to healthcare: seen. The three-hour livestream will be hosted by Greg Grunberg, an actor and bleeding disorders…
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…
