Some medical offices won’t schedule me for a procedure without clearance from my hematologist. Others never even ask. I’m the same patient with the same blood, yet I get completely different answers to the same question: Does my bleeding disorder matter? For my colonoscopy earlier this year, the answer…
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For years, I saw wheelchairs and other mobility devices as symbols of limitation — signs of everything a person could no longer do. Then my youngest son, Caeleb, needed a wheelchair due to complications of hemophilia, and I began to see it through his eyes. What I feared would…
Our 7-year-old daughter, Cittie, recently found herself at the top of a climbing wall at a neighborhood playground. She had managed the climb just fine, but when it came time to descend on the other side, she hesitated. Other children were doing it without much thought, while some parents were…
In the spring of 2025, I set out to create a piece of art depicting both the challenges and the beauty of navigating treatment for hemophilia A. However, soon after I started the piece, my health plummeted, and I could no longer focus on art. Over the course of…
The letters start arriving in October. There are plan summaries, notices of benefit changes, and a glossy booklet with a smiling family on the cover. I’m fairly sure that family has never called a specialty pharmacy to ask where their delivery went. For most people, open enrollment is a chore.
When our sons were younger, my wife, Cazandra, and I struggled to balance our jobs, our relationship, and their very different needs. When our younger son, Caeleb, was between the ages of 5 and 8, complications from his hemophilia repeatedly knocked us to our knees. I often felt…
Sometimes, when my husband, Jared, self-infuses, I can tell when something has shifted. He has severe hemophilia B and has been self-infusing for years. He knows the process. He knows his veins. He knows how to prepare his factor and what needs to happen next. But if he…
For the past week, my inbox has been filling with the same notification: Someone new has registered for “Dismissed.” I read every one. Some names I know, the advocates and friends who’ve sat beside me at conferences for years. Most I don’t. Those are the ones I think about. A…
My youngest son was frequently hospitalized due to bleeding episodes brought on by hemophilia, and it often left me feeling trapped and stressed. I brought work projects with me, but the constant interruptions left me feeling powerless and unable to focus. My anxiety often soared. Caeleb picked up on my…
I am the mother of Lean Archer De Guzman. This is our family’s journey after my son was diagnosed with severe hemophilia. When Lean was 5 months old, I noticed bruises appearing on his body. It was the first time I’d experienced a condition like this, so I was…
