In Austria, most patients with hemophilia have been vaccinated against COVID-19 — but some expressed concerns over the vaccine’s potential side effects — a small study found. Data showed that 75.0% of the patients in the study were fully vaccinated and that 87.5% had received at least one dose…

I knew that I wanted to teach theology at the university level. I prepared a great résumé and felt academically equipped, having received my doctorate in ministry. I applied to dozens of schools, but no one offered to hire me. I questioned my abilities and couldn’t understand why I…

Nearly all men with moderate-to-severe hemophilia B given the experimental gene therapy EtranaDez (etranacogene dezaparvovec) in the HOPE-B trial have stopped using prophylactic therapies, full study results show. Trial data also indicated that EtranaDez, formerly known as AMT-061, is effective in people with antibodies against the viral vector…

It happened after a month of celebrations. First, it was Christmas and New Year’s. Then, it was my husband Jared’s birthday. Five days later, our daughter, Cittie, turned 3. Plus, we had just moved to a new home next to some uncles who kept inviting us to relatives’ birthdays…

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…