To ensure the health and safety of participants given the ongoing COVID-19 pandemic, this years’ Bleeding Disorders Conference (BDC) will be held virtually Aug. 26–29. An additional day of pre-conference workshops is slated for Aug. 25. While the conference was meant to take place in Denver, Colorado, its…
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My husband, Jared, and I have written about the limited supply of clotting factor IX in the Philippines, where we live. Lately there’s been a greater shortage of that factor, which treats hemophilia B patients such as Jared. That cast a shadow over our hemophilia community’s recent annual…
I spend a lot of time in the kitchen during the holiday season. I enjoy creating my favorite dishes and finding new and exciting recipes. Many people follow recipes strictly, but I find joy in realizing they’re more of a guide than an exact science. Using a guide to cook…
For children with severe hemophilia A who develop inhibitors — neutralizing antibodies that reduce the effectiveness of standard therapies — starting treatment to eliminate inhibitors earlier is associated with a higher chance of success, a recent study reports. The study, “Low-dose immune tolerance induction therapy in…
It’s almost 11 in the morning. My husband Jared and I are lined up at the mall-based satellite branch of our national health insurance system. By now, the mall has been open just less than an hour, but there must be a hundred or so people already, impatiently awaiting their…
A newly designed platform based on the principle of “reverse vaccination” could be used to prevent the development of an immune response that blocks the effectiveness of treatments for hemophilia and other disorders. “For nearly a third of patients with hemophilia A … their own immune system is…
It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…
Differences in sensory detection and pain thresholds were found in hemophilia patients taking prophylactics, compared to healthy individuals, and these differences did not change over the course of a one-year follow-up study. These findings indicate that “under prophylactic treatment, the existing difference in the pain profile between [people with…
Takeda presented new real-world data highlighting the underdiagnosis of hemophilia A and B, supporting the effectiveness and safety of its hemophilia therapies — Advate, Adynovate, and Feiba — and discussing potential benefits of personalized therapies. The company presented these latest data at the 13th Annual Congress…
A phone call in the wee hours of the morning makes the heart skip a beat, as it often brings bad news. A baby crying in the middle of the night means a sleep-deprived parent going through the motions of changing diapers and warming bottles. When the quiet hours of…