I live in the high desert of New Mexico, where we have over 300 days of sunshine each year. It’s a perfect place to hike, bike, climb, and run. The beauty of this place is undeniable. Yet despite all its splendor, I often find myself yearning for the storms.
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After the flooding from Hurricane Milton totaled my car, I found myself with a whirlwind of emotions and decisions to make. Now, as I embark on the journey of car shopping, I can’t help but notice how much this process mirrors my life with bleeding disorders. Both experiences require patience,…
People living with bleeding disorders such as hemophilia and von Willebrand disease report consistently high levels of satisfaction with the care they receive at U.S. hemophilia treatment centers (HTCs), according to the results of the U.S. HTC Network’s first national survey. Most respondents said they were satisfied with…
In January 2017, I lost my mother, who had fought cancer for several years. I fell into a deep depression, and then suddenly found out I was pregnant. The new life inside of me helped me slightly overcome the depression. I started taking better care of myself and researching…
Researchers at the Center for Research in Transplantation and Immunology in France have reviewed a paper concerning certain strategies utilized to correct hemophilia B and the importance of gene delivery vehicles in successful therapies for treatment of the condition. The review paper, “Successful correction of hemophilia by CRISPR/Cas9 genome…
Switching to Jivi (damoctocog alfa pegol), an extended half-life replacement therapy, from Kovaltry (octocog alfa), may help adults and children with severe hemophilia A experience fewer or no bleeds, according to a Canadian study. “Data from this study provide routine clinical evidence supporting the use of [Jivi]…
AAV5 DetectCDx, a companion diagnostic test used to determine patient eligibility for the hemophilia A gene therapy Roctavian (valoctocogene roxaparvovec-rvox), has been cleared for use under more stringent European Union rules coming into effect in a few years. Specifically, the test gained the Conformité Européenne (CE) mark under…
An 87-year old woman with acquired hemophilia A (AHA) showed no adverse events or major bleeding events after starting on Hemlibra (emicizumab). The findings suggest that Hemlibra may be a better option for bleeding prevention in AHA patients than bypassing agents, the team said. The study, “…
January is my three-year “clotaversary,” a holiday I celebrate every year after surviving a life-threatening situation during a major surgery. I have von Willebrand disease (VWD) and hemophilia B, and without treatment, I’m at risk for dangerous bleeds during surgical procedures. In 2019, I needed a radical…
In the marketing world, we have a concept called the elevator pitch. An elevator pitch is a short, persuasive speech delivered in the time it takes to ride an elevator, hence the name. The goal of an elevator pitch is to quickly and effectively communicate a person’s ideas, product, or…