Caeleb, the child doctors said I’d never have, has changed my life. He is 16 and thinking about his future. That may sound like a normal thing for a 16-year-old, but I was unsure about his future with his hemophilia A. His life with this disease has been…
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Last week, as I was leaving the Coalition for Hemophilia B’s annual symposium in Dallas, I found myself in an Uber headed to the airport. Usually, I wouldn’t discuss my bleeding disorders — hemophilia B and von Willebrand disease — with strangers, but a chance encounter…
Last Friday started like any other day. I felt excited that I’d survived my first week back at work after an incredible vacation in Washington, D.C. I began to prepare a mental schedule to order my day. As I thought of the many things around the house that needed my…
Novo Nordisk has submitted an application to the U.S. Food and Drug Administration seeking approval to market Mim8 (denecimig), an injection therapy for preventing bleeds in people with hemophilia AÂ with or without inhibitors. If approved, Mim8 would be sold as a single-use, prefilled disposable pen for subcutaneous,…
Walking into a new hematology visit can feel overwhelming, but preparation and clear communication can help you feel more in control. This guide shares simple ways to advocate for yourself and build a care partnership that truly listens.
News
New Version of Possible Gene Therapy for Hemophilia B, SPK-9001, Enrolling More Patients in Trial
An ongoing Phase 1/2 clinical trial evaluating a gene therapy, SPK-9001, in people with hemophilia B is expanding its enrollment by up to five more patients, who will be given a new version of the therapy, its developer announced. One patient in this group has already received SPK-9001 produced under…
I was pleasantly surprised to see a character with hemophilia depicted in a recent episode of “Call the Midwife,” a television series I adore. Usually, I’m disappointed with how hemophilia or von Willebrand disease is presented on TV, as it’s often inaccurate. This time, however, I felt the…
The levels of blood clotting factors, physical activity, and bleeding history are all potential risk factors for future bleeds in hemophilia patients under preventive therapy, a small review study from Canada suggests. “These and other risk factors for bleeding could be combined in a risk assessment model (RAM) for…
The widespread adoption of telehealth during the COVID-19 pandemic has improved access to specialty care for people with hemophilia, made it more convenient, and increased patient engagement, a study based on surveys reported. Healthcare providers at an Irish care center also…
The start of a new year often brings a surge of enthusiasm, hope, and resolutions. We might set ambitious goals like, “This is the year I lose weight.” Or, “This is the year I go to the gym five days a week.” Or, “This is the year I mend a…