Women with hemophilia and other bleeding disorders are more likely to experience postpartum hemorrhage and other bleeding problems related to pregnancy and childbirth than those without such diseases, a population-based study from Canada reports. Findings “showed that women with inherited bleeding disorders are at increased odds of [postpartum hemorrhage]…
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The U.S. Food and Drug Administration (FDA) has accepted — under priority review — a marketing application for EtranaDez (etranacogene dezaparvovec), an investigational gene therapy for adults with hemophilia B. The FDA grants priority review to investigational therapies designed to treat serious medical conditions. If approved, the treatment…
How to Live Your Best Life With a Chronic Illness
https://www.youtube.com/watch?v=rCZunn4ML5o If you’re living with a chronic illness, it’s easy to slip into a malaise and feel sorry for yourself. This isn’t a helpful state of mind and it potentially means you’re missing out on life. In this video from NewLifeOutlook, Anna Scanlon shares her five…
Hemlibra (emicizumab-kxwh) has been a wonder medicine for many hemophilia patients, including my youngest son. Among the benefits that he receives is a respite from internal bleeds. He now infuses every other week instead of every day. We no longer focus on numbers regarding inhibitor levels, but pray…
Nearly one-third of people with hemophilia B have antibodies against a subtype of an adeno-associated virus (AAV) — called AAV6 — that is used as an experimental gene therapy carrier, a U.K. study found. Because such antibodies could render the treatment that the carrier holds ineffective, these patients would…
Our Virtual Connectedness
As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from dear friends who struggle with medical issues like mine. Why then do I find it hard to take advantage of…
In the Bible, there’s a story of a blind man on the side of the road begging for Jesus’ help. Jesus spat on the ground, made mud, and put it on the man’s eyes. He then instructed the man to go to the water and wash the mud…
My youngest son, Caeleb, received great news last week from his college, the University of New Mexico: A letter confirmed that he has a dormitory room for school next year. When he showed the letter to my wife, Cazandra, and me, we shouted for joy. Everything associated with our…
I entered the bedroom of my youngest son, Caeleb, one recent morning to offer him my usual cheerful greeting. That’s when I found him lying in bed in excruciating pain. Caeleb has hemophilia A, and years of damage from internal bleeding episodes have left him with little…
My 4-year-old daughter, Cittie, recently invented a song about her dad. It’s sung to a tune that’s quite popular in children’s short videos, with the words “Daddy is a bleedy boy.” When my husband, Jared, heard it for the first time, he cracked up. He’s often referred to himself as…