Women who are hemophilia carriers are at a higher risk of experiencing heavy bleeding after giving birth, particularly those who are not on a prophylactic, or preventive, treatment regimen, a new review study has found. Researchers say these findings indicate that more intensive preventive treatments might benefit carriers about…
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In the past month, it has been hard for me to focus on hemophilia advocacy efforts, which normally are a burning passion. Disappointment over an opportunity to work more deeply with the hemophilia community that didn’t pan out and COVID-19 realities have me pulling back.
NovoSeven stops or slows bleeding in children with hemophilia but is associated with blood clotting, a study of hospital medical records indicates. The team that did the retrospective study said more risk-benefit studies of children’s use of NovoSeven are needed. NovoSeven is also known as recombinant activated factor VII – rFVIIa. The…
A second opinion can bring clarity, reassurance, and confidence when making important hemophilia care decisions. Exploring another expert’s perspective may help ensure your treatment plan aligns with your needs, priorities, and long-term health goals.
Hemgenix (etranacogene dezaparvovec), formerly known as AMT-061 and EtranaDez, is a gene therapy given as a one-time intravenous (into-the-vein) infusion to treat bleeding episodes in hemophilia B.
One-time treatment with the investigational gene therapy SPK-8011 led to sustained low bleed rates for people with hemophilia A in a Phase 1/2 clinical trial. That’s according to data of up to 5 years of follow-up presented by the therapy’s developer, Spark Therapeutics, at the annual meeting of…
What was my reaction the first time I encountered a comprehensive hemophilia treatment center (HTC)? Relief! I couldn’t believe the resources that were available to those fortunate enough to be treated at one. With quality care, emotional and employment counseling, physical therapy, dental health, and school assistance, the HTCs seemed…
My alarm rings every day at 7 a.m. I get out of bed, brush my teeth, take my medications, and start my day. As the coffee maker begins to brew a fantastic cup of decaffeinated piñon coffee, I take my girls — my dogs, Laggie and Hildie — outside. I…
Recommendations for vaccination practices for patients with hemophilia should be reassessed in an effort to minimize fear and emphasize the importance of vaccination to prevent infections, suggests a survey among physicians in Germany. Data from the PEDNET registry, a database of children with hemophilia, suggest that vaccination in close…
At 6 p.m., Monday through Friday, my television is faithfully tuned to “Jeopardy!” The theme song and sounds of the buzzers usher in a comforting ritual each night that’s part of my home. “Jeopardy!” is a long-running quiz show where contestants are given the answers and must respond with a…