A single dose of Roctavian (valoctocogene roxaparvovec-rvox), a gene therapy for severe hemophilia A from BioMarin Pharmaceutical, maintains factor VIII (FVIII) levels at near-normal or normal levels for up to five years, with most patients staying off prophylaxis, or preventive treatment. These lasting benefits were observed in GENEr8-1…
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A few years ago, I woke up to find my right breast swollen, hot, red, and extremely painful. Beneath the skin was a lump that felt about the size of a golf ball. I’d had mastitis before, in the other breast, so I wondered if this pain could be…
To say my youngest son, Caeleb, is excited to start his second year at the University of New Mexico is an understatement. He lived at home during his freshman year, but next month, he’ll move into a dormitory. He can’t wait to spread his wings and live on his own(ish).
Helping people brings me joy. As a hospice chaplain assisting families through their darkest hours, I am truly fulfilled. Outside of my work, my heart is full when I can make dinner, pick up groceries, or visit a friend. But asking for help is an entirely different thing. During my…
The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now…
Caeleb, my youngest son, is 19 and preparing for his second year of college at the University of New Mexico. He’s experiencing an issue at school that required him to write a letter explaining the difficulties he faced because of hemophilia during his freshman year. As a child, he…
Several years ago, I spoke at a great bleeding disorders conference in California. Around 300 people attended, and we all had wonderful interactions. The attendees engaged with one another and found hope in their shared experiences. I left the conference energized and proud to be part of such a…
Hemlibra (emicizumab-KXWH) safely reduces bleeding episodes in people with hemophilia A without inhibitors, resulting in a high rate of patient satisfaction, according to a review of published studies. “The success of [Hemlibra] underscores the potential for innovative therapeutic approaches to significantly improve patient outcomes and quality of life…
Mother Nature was not kind to my area of Florida last year. First came Hurricane Helene, bringing widespread flooding. Just two weeks later, Hurricane Milton struck, unleashing high winds and another round of devastating floodwaters. The effects are still visible today: Businesses have shuttered, restaurants remain closed, and the damaged…
My family recently moved to Las Cruces, New Mexico. Boxes, packing paper, and tape have been a constant over the past few months. I’m grateful that my husband and sons are experienced movers. We all have a system, a rhythm to packing that we don’t even discuss. I pack…