Instead of Powerball, I have won the rare bleeding disorder lottery. I have von Willebrand disease and hemophilia B, a less common form of hemophilia that arises when a blood-clotting protein called factor IX is missing or deficient. My diagnoses are rare within a rare community. I often feel like a…
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Mild-to-moderate hemophilia has a significant impact on the physical and psychosocial health, and life quality, of both men and women, according to a recent study. Findings also highlighted the unmet needs of these patient groups, supporting better guidelines and quality of care for people with mild-to-moderate disease, its researchers…
People with severe hemophilia B are likely to develop hemophilic arthropathy — a painful and degenerative joint disease caused by recurrent bleedings — despite the lower bleeding frequency relative to hemophilia A, a natural history study shows. The data also highlights that prophylactic (preventive) treatment guidelines are not being…
FLT180a, also known as verbrinacogene setparvovec, is an investigational gene therapy that was investigated as a treatment for people with hemophilia B.
About 30% of people hospitalized due to acquired hemophilia have a bleeding event, while 17% report a thrombotic, or blood clot-related complication, such as stroke and deep vein thrombosis, a nationwide U.S. study finds. Patients ages 65 years and older, and those with thrombotic events were more likely to…
Dear Hemophilia Parent, Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days, 2 years, or 20 years old. First and foremost, you are awesome, and I…
Treatment with Ixinity (trenonacog alfa) can safely control bleeds in children younger than 12 with severe or moderately severe hemophilia B. That’s according to data from a Phase 3/4 clinical trial that Medexus Pharmaceuticals, the company that markets Ixinity, presented at the National Hemophilia Foundation’s recent Bleeding…
A recent clinical trial indicates that replacement therapy with plasma-derived factor VIII is associated with lower incidence for development of inhibitors in patients with severe hemophilia A. The study,“A Randomized Trial of Factor VIII and Neutralizing Antibodies in Hemophilia A,” was published in The New England Journal of…
Embracing the start of 2024, I reflect on the friendships I’ve made within the hemophilia community over the past year. As a woman navigating the complexities of hemophilia B and von Willebrand disease, these connections have become a source of strength and solidarity for me. Each person…
When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia. The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with…