Dexamethasone, a steroid with immunosuppressive and anti-inflammatory properties, may temporarily increase the efficacy of one-time gene therapy when given at later time points, a study in mice suggests. Lab results showed that dexamethasone increased the levels of factor IX (FIX) — the missing clotting protein in hemophilia B —…

My youngest son, Caeleb, called me to pick him up early from jazz band rehearsal last week. I could hear a hint of panic in his voice. Caeleb has complained of arm pain over the past few months, but it never seemed to be a big problem. I hoped it…

We find ourselves in a delightful spot regarding hemophilia. My youngest boy’s last internal bleeding episode occurred nearly eight years ago. Using prophylactic treatment, we’re managing his bleeding disorder well. My older son, who struggled with breakthrough bleeding episodes despite using a recombinant factor VIII product, now finds…

It’s hard to believe that my 16-year-old son, Caeleb, is moving into adulthood. He is not approaching adulthood, but moving toward it, and he still has much to learn about managing hemophilia. At a recent annual appointment at the hemophilia treatment center (HTC), a nurse quizzed him about what…

Last weekend, I met with some of my pastoral colleagues at a restaurant in Santa Fe, New Mexico. The food was terrific and we dined with the mountains behind us. I looked out the window to see several ski runs etched in the slopes and thought, “My goodness, it doesn’t…

Those wishing to memorialize family members or friends who have lost their lives due to an inherited bleeding disorder like hemophilia, and who want to help empower and educate future patients, are invited to create a video for the World Federation of Hemophilia (WFH) 2022 World Congress. Specifically, the…

I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic,…

My husband, Jared, recently celebrated his birthday. Hooray for 29 years of fighting and surviving! He opted for a low-key celebration at home with me, our daughter, Cittie, and her nanny. Because it was a weekday and I had to work, we didn’t have much time to do anything particularly…

Next week, my youngest son will celebrate his 16th birthday. It’s hard to believe that so much has occurred in his young life. He has experienced the heartache of living with a bleeding disorder, and has often been paralyzed by his fear of needles. He has undergone 16…

Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to…