A cursor blinking on a blank page. A fresh blanket of snow. A blank canvas with new paint ready to be used. Like these images, the new year represents a blank slate and hope for what’s to come. Many people make New Year’s resolutions, such as losing weight, exercising more,…
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Weeds. They’re inevitable. In the desert of New Mexico, where we live, fighting weeds after an active monsoon season means pulling them from xeriscape yards. The yard rocks make it difficult to eradicate weeds. It’s a tireless task to complete in the desert heat, especially when that active monsoon…
My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding…
My youngest son, Caeleb, recently graduated from high school and, at 18, is legally recognized as an adult. This milestone brings a host of new responsibilities and rights: He can vote, buy and sell property, sue or be sued, and enter into binding contracts. Despite all our preparation for…
Feeling Guilty
Last week, my husband and I took our mighty warrior Caeleb to the hemophilia treatment center so that we could touch base with his hematologist. Caeleb recently had labs drawn, and it was time to sit for a meeting about his treatment. We were called to the back to…
My husband, Jared, and I work to earn a living. We freelance for various clients and run a business — though due to the state of the economy here in the Philippines, business isn’t as profitable as it used to be. In between jobs, we dedicate a significant chunk of…
Support Changes Everything
Hemophilia takes a toll not just on the life of the individual who struggles with the disease, but also on the family unit. It is not easy to have a genetic disorder as a life focal point that does not go away. When a woman has hemophilia, it…
Patient dosing has been completed in a registrational Phase 3 clinical trial in China testing BBM-H901, Belief BioMed‘s (BBM)’s investigational gene therapy for hemophilia B, the company announced. BBM-H901 is designed to restore the production of factor IX (FIX) — the blood-clotting protein that is faulty or missing…
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,…
The Hemophilia Federation of America (HFA) is now offering mental health and well-being courses, through its Learning Central program, to support people with hemophilia, as well as their caregivers. Topic areas include anxiety, suicide, trauma, pain management, depression, and grief. Offered resources in the program’s library can be…