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…
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More than half the adults with hemophilia A in the Phase 3 GENEr8-1 clinical trial remain completely free of bleeds needing treatment, four years after a single dose of the gene therapy Roctavian (valoctocogene roxaparvovec-rvox). Also, activity levels of factor VIII (FVIII), the faulty clotting protein in hemophilia…
I cannot stress enough how profoundly heavy menstrual bleeding can impact everyday life. Imagine needing to find a bathroom nearly every hour, seven days a week. It can make certain career choices extremely challenging and disrupt daily activities, including school and athletics. When I was young, I didn’t realize my…
For the last two weeks, my family has celebrated a significant milestone for my youngest son, Caeleb. He graduated high school and now looks forward to life as a college freshman. My boy is excited about this new adventure. While I’m grateful that he celebrated a mountaintop experience, I…
Good mental health is crucial for caregivers of people with chronic illnesses. As a wife to someone with severe hemophilia B and epilepsy, I’ve seen firsthand how mental health matters to both patient and caregiver. I have to balance my husband’s needs with my own physical and…
Equipping yourself with knowledge is crucial for advocating for your hemophilia B healthcare, especially if you want to ask your doctor about trying a new treatment like gene therapy.
A pastor in the United Methodist Church agrees to participate in an itinerant system, in which a governing body, the Cabinet, moves clergy to where their gifts and graces are needed. I’m serving my fourth church at the First United Methodist Church of Belen, New Mexico, where…
Last month, my husband, Jared, and I enrolled our daughter in a new school. She’ll start kindergarten in a few months, which marks the beginning of mandatory schooling here in the Philippines. Although her current school is decent and she’s a beloved student there, we felt she might thrive more…
In real-world settings, Hemlibra (emicizumab-KXWH) can safely control bleeds in children with hemophilia A better than previous treatment regimens, a study reports. Hemlibra’s improved efficacy was more pronounced among patients with inhibitors, or neutralizing antibodies targeting factor VIII (FVIII), which is the clotting protein missing in people with…
My youngest son, Caeleb, crossed the stage on Saturday afternoon and received his high school diploma. He relied on the assistance of a cane, which serves as a constant reminder of the chronic pain he suffers as a result of breakthrough bleeds in his right knee and ankle.