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…
Discussion
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…
Discussion
Artificial intelligence (AI) shows promise for helping doctors diagnose hemophilia, detect joint complications, and predict disease severity and other clinical outcomes, a review of published studies suggested. “However, methodological [diversity], limited external validation, and the scarcity of studies … remain important barriers to routine clinical implementation,” the researchers wrote.
Discussion
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…
Discussion
Preventive treatment with low-dose Hemlibra (emicizumab-KXWH) significantly reduced bleeding and improved quality of life in young children with hemophilia A, regardless of inhibitor status, a real-world study in China found. But ultrasound scans showed signs of worsening joint health despite fewer clinically apparent bleeds, suggesting that lower doses may not…
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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