Columns

It’s no secret that I love musicals. My greatest joy is finding phrases from a show’s libretto that speak to my soul. One such event happened when I saw the musical “Wicked” on Broadway. Toward the end of the show, witches Glinda and Elphaba sing a moving ballad in…

Last in a series. Read parts one and two. Guinea pigs are similar to humans. Their body chemistry has led to testing that’s revolutionized research, with the development of vaccines, replacement heart valves, and asthma medications, to name a few. The term “guinea pig” has become synonymous with…

It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We…

While cleaning up recently, I found a physician-authored exercise guide from 2002 for Filipinos with hemophilia. It was fascinating to read, especially knowing that at the time, synthetic factor products were still scarce here in the Philippines. Treatment options were limited, and many people with hemophilia still relied…

Note: This column describes the author’s own experiences with surgical procedures. Not everyone will have the same response to these operations. Consult your doctor about the potential risks and benefits of any procedure you’re considering. As I get older, the thought of needing any kind of surgery scares the…

“OK, son. It’s time to get out of bed and face the day.” “But Dad, my leg hurts really bad. I don’t think I can go to school today.” Many days when my youngest son, Caeleb, was in high school, he and I began our day with my boy admitting…

Second in a series. Read part one. A hemophilia inhibitor is like a firewall in a computer network. Clotting factor replacement therapy is supposed to enter the bloodstream and help form clots to stop bleeding, just as data should pass through a network without interruption. However, an inhibitor acts…

“It looks like a murder scene every time.” “I place multiple towels under me and make sure they’re a dark color.” “I gave up on towels and turned to doggie pee pads, which protect my bed better!” I’ve heard countless women share such quotes and more when we gather at…

There’s a saying that’s been on my mind a lot lately: “Action is the antidote to anxiety.” It resonates deeply, especially in our household, where uncertainty is part of daily life. My husband, Jared, has severe hemophilia B and epilepsy — two conditions that bring unique challenges. Together, they…

Gene therapy has long been touted as a revolutionary hope for people with hemophilia B, promising a one-time treatment to drastically reduce — or even eliminate — the need for frequent infusions. Yet that hope has hit another roadblock. Pfizer announced last week that it’s halting development of…