Caring for a child with hemophilia can bring emotional strain and disrupt family life even as advances in treatment make it easier to manage the disease, a study in the Netherlands found. Caregivers interviewed for the study generally valued the care they received at specialized hemophilia centers, but identified important…
Discussion
I’ve been thinking lately about how resilience is discussed in the Philippines. After major storms, familiar images circulate online: weddings continuing despite floodwater inside churches, people joking or swimming through flooded streets, and families smiling while cleaning mud from their homes. There is something admirable about finding humor when…
Discussion
Hurricane Ian directly hit my condo in 2022. My mother and I evacuated to Orlando, Florida, and couldn’t return for weeks. It was long enough that “recovery” became its own kind of routine — a slow, stubborn process that I eventually made my way through. I know how to do…
Discussion
In children with severe hemophilia A who are undergoing treatment to remove inhibitors, adding Hemlibra (emicizumab-KXWH) was associated with faster immune tolerance and fewer treated bleeds. Adding Hemlibra also did not increase direct treatment costs during immune tolerance induction, study data showed. The work was partially funded by…
Discussion
First in a series. This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a professional entertainer hoping to sing on Broadway one day. Currently, he’s on his first national tour for…
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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