Hurricane Ian, which battered the southeastern United States and the Caribbean in late September and early October, nearly destroyed the home of a client of mine. She compares the damage to a violent tornado combined with a devastating flood. Parts of her home were gutted. In the aftermath, she…
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Taking charge of your health when you have hemophilia is of great importance. Regardless of your hemophilia type — A, B or C — the goal is to keep your joints strong and healthy, and to keep extra weight off to avoid muscle strains and bleeding in vulnerable joints. Obesity…
Ixinity (trenonacog alfa) can effectively prevent and control bleeds in young children with severe or moderately severe hemophilia B, according to data from a Phase 3/4 clinical trial. “This study showed that [Ixinity] was safe and effective as prophylaxis and for controlling bleeds in previously treated persons with…
A first adult with hemophilia B in the U.S. has been treated with commercially available Hemgenix (etranacogene dezaparvovec), a recently approved and first gene therapy for the disease, CSL Behring announced. “As part of our longtime promise to patients, CSL Behring is thrilled to mark this latest milestone…
I’ve written here numerous times about my love for the American pop-punk band Fall Out Boy. Since discovering them in 2007, I’ve been a huge fan of not just their music, but also the guys in the band and their individual career paths. My husband, Jared, and I…
Iron deficiency has always been a part of my life as a woman with the bleeding disorders hemophilia B and von Willebrand disease. Iron is essential for your body to function, I have learned. One cause of iron deficiency is bleeding. When I am anemic, or my…
In this series of podcasts from Bloodstream Media and shared by Bloodfeed, host Patrick James Lynch submits questions about hemophilia and other bleeding disorders from listeners to various hemophilia and health care experts. MORE:Â Learn more about the Hemophilia CHOICE Project Survey The podcasts feature a pediatric…
I enjoy Sunday mornings. As a United Methodist pastor, I lead worship and love on my congregation. However, one of my favorite parts of the morning is my commute. My youngest son, Caeleb, comes with me to church. He is responsible for the video recording and sound each Sunday.
In this video shared by Colleen, learn about a mobile app from Pfizer which helps hemophilia patients track bleeds, infusions and factor supply. It also allows those living with the disease to track their daily physical activities, steps and heart rate to help…
Novo Nordisk’s recombinant coagulation factor IX nonacog beta pegol (N9-GP), under the U.S. trade name Rebinyn, has been approved by the U.S. Food and Drug Administration (FDA) to treat adults and children with hemophilia B. The company expects to launch this new treatment in the United States early in 2018. The…