I’ve noticed something strange over the years: Adults with hemophilia sometimes disappear from conversations that were built for them. I first noticed it in support groups. The louder caregivers became, the quieter some people with hemophilia seemed to get. Some stopped participating altogether. Others drifted toward spaces led by…
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I’ve been standing in front of my closet longer than I’d like to admit. It’s not vanity. It’s because I know what I want the clothes to do: I want to walk into a marble hallway and have the person across from me see someone steady, prepared, worth listening to…
When my sons were small, I didn’t give speaking up on their behalf a second thought. As toddlers, they had little interest in sitting through difficult explanations about their bodies and about hemophilia. They wanted to be free to play with toys and their friends. When internal bleeds…
The swimming pool was the best place to be for a young girl growing up in the hot Texas summers. I’d hand over my crumpled dollar at the counter and spend the whole day there. After a quick shower, I’d grab my face mask, towel, and snack bar money, then…
Every June, my social media feeds fill with rainbows. My LGBTQ+ friends celebrate Pride Month, while others share deeply personal stories about identity, belonging, and acceptance. Some are hopeful, some heartbreaking, and most carry a bit of both. Every year, I read those stories and find myself thinking about my…
For most of my childhood and teenage years, I thought everyone planned their lives around their periods the way I did. I wore dark clothes to school, kept my backpack stocked like a field hospital, and constantly did the quiet math of how long I could sit through a class…
Since my youngest son, Caeleb, arrived home from a successful second year of college, he has been interning at the church where I serve as pastor. His main job is to shred countless old documents, so I’ve nicknamed him “Shred Boy.” So far, he enjoys working and does a good…
At work, I’m the second-oldest on my team. With our ages ranging from mid-20s to early 50s, we each bring different life experiences. I’m always interested in hearing the Gen Z and millennial women share their stories. As a Gen X person, I sometimes do things that remind me of…
In recent years, there has been a massive shift in the understanding that female hemophilia carriers can indeed have the condition themselves. Fellow Hemophilia News Today columnist Jennifer Lynne and I both write regularly about the struggles women with hemophilia face, though more are now being properly diagnosed…
If you’re raising a child with hemophilia, I understand the fear. It starts early — before sports, sleepovers, and field trips, and often before they’re old enough to understand their diagnosis. You learn about joint bleeds, head injuries, emergency room visits, and all the things that can go wrong.
