I’ve been reading quite a bit of philosophy in my free time lately. Right now I’m reading the works of Seneca, a first-century Stoic philosopher. I’ve always been interested in Stoic philosophy and its teachings. As a field of study, Stoicism is concerned mainly with how humans can attain…
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I do not give up. It’s in my DNA to find answers to questions, even if it takes a long time. I hope my sons, who both have hemophilia, inherit this characteristic of seeking out answers. I pray they have the strength to never accept defeat. I tell them…
Today, as we take time to celebrate the gift of one another, I can’t help but think about the many trials my 16-year-old son, Caeleb, faced this year as a result of hemophilia. As a child, Caeleb struggled with frequent breakthrough bleeds, which have left him with excruciating…
The first gene therapy for adults with hemophilia B — branded as Hemgenix (etranacogene dezaparvovec) — has been approved by the U.S. Food and Drug Administration (FDA). Meant to be a one-time treatment, Hemgenix is expected to keep bleeding in check in the long term, while also allowing patients…
Kendall Fitzpatrick and I have much in common. Like me, she has hemophilia B and von Willebrand disease. She’s a registered nurse, works for a specialty pharmacy, and is an outspoken advocate for women with bleeding disorders. She lives in New Kent, Virginia, and is mother to a…
My youngest son, Caeleb MacDonald, is a 16-year-old with hemophilia and chronic joint pain. Several times this year, the pain has become so intense that he cannot get out of bed. I cannot help but associate his new pain issues with his earlier years, when he suffered multiple…
My husband, Jared, and I are in an interesting stage of our parenting journey. Our daughter, who is almost 4, will be going to preschool soon, but for now, she spends almost every day with us at home. She has a rather introverted temperament, so most of the…
Two new gene therapy vectors designed for liver diseases show promising effects in a mouse model of hemophilia B, according to a recent study. The study, “Adeno-associated virus serotype 2 capsid variants for improved liver-directed gene therapy,” was published in Hepatology. Hemophilia B is caused…
On Monday, the preschool at my church celebrated Halloween, complete with little goblins, ghosts, and other assorted creatures. The children bragged about their costumes, saying, “Look, Pastor Joe, I’m a princess. Look, Pastor Joe, I’m a ferocious Samurai warrior.” They looked terrific, and I asked them if they wanted a…
Growing up in Texas meant Friday night football games. It’s a religion there. As a girl in elementary school, I’d go with my family to games — not so much to watch football as to see the halftime show. But I found myself enamored with the cheerleaders. They were athletic…