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…
Measuring levels of YKL-40 — a protein associated with inflammation and tissue remodeling — may help detect hemophilic arthropathy, the joint damage caused by repeated bleeding, in people with severe hemophilia A, a study found. The researchers said the results “suggest that YKL-40 has potential as a biomarker, with its…
Discussion
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…
Discussion
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…
Discussion
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…
Becoming educated and informed about hemophilia is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your hemophilia journey.
There is no cure for hemophilia yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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