The adventure of life is filled with ups and downs. Focusing on a word instead of on New Year’s resolutions can be a powerful practice when navigating a bleeding disorder. A focus word serves as a daily reminder and source of motivation, providing a lens through which to…
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Soon, I’ll leave sunny Florida for the northern tundra of Madison, Wisconsin, and Schaumburg, Illinois, to be with my family for Christmas. As I prepare to spend time with my loved ones, I can’t help but appreciate the significance of this trip: It marks my first Christmas journey without…
The holiday season means different things for different people. Wrapping presents, taking a family vacation, or simply baking cookies are some of the activities that bring people happiness during this time. Regardless of a person’s faith, tradition, or experience, the holidays are meant to bring joy, love, hope, and…
Bleeding rates and the use of replacement therapies among men with severe or moderately severe hemophilia B remain low at least three years after a single dose of the approved gene therapy Hemgenix (etranacogene dezaparvovec). That’s according to updated data from the Phase 3 HOPE-B clinical trial…
My husband, Jared, and I attended our first international concert together this month when we saw the American rock band Fall Out Boy at the Araneta Coliseum in Quezon City, Philippines. This concert was a milestone for both of us and truly one for the books. I’ve dreamed…
I eagerly anticipate a future where inherited bleeding disorders can be conclusively diagnosed, with absolute certainty, through genetic tests. Currently, conditions such as von Willebrand disease (VWD) pose diagnostic challenges, frequently requiring multiple tests over extended periods for confirmation. Although my initial diagnosis came after a single test,…
In the Philippines, where we live, Christmas isn’t confined to a single day. It unfolds as a season that spans about a third of the year, kicking off in the first of the “-ber” months. As a child, I cherished the joy of strolling through streets adorned with flickering…
‘Tis that season again — not the one adorned with festive decorations and holiday cheer, but the one with the formidable task of selecting a health insurance plan from the marketplace at healthcare.gov. For those contending with hemophilia or other chronic health conditions, this annual ritual can be…
Last month, I had the privilege and the honor of being one of 60 attendees at the Mild Matters Summit in Tulsa, Oklahoma, organized by the Hemophilia Federation of America (HFA). The summit aimed to empower those with mild bleeding disorders by providing essential information and tools to…
The holiday season is upon us. Often, we have our meal around a table with people we love, and we give thanks for one another’s company. The holidays are all about rituals — preparing feasts, gathering to exchange gifts, and focusing on the things that unite us. Year after…