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…

Health Canada has expanded its approval of Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in hemophilia B to patients under age 18. The therapy, developed and marketed by Novo Nordisk, is now available to all hemophilia B patients as a preventive (prophylactic)…

Last week, I wrote about the bond I formed immediately with my oldest son, Julian. Caeleb, my youngest son, recently reminded me of the unique bond he and I share. Toward the end of her third trimester, my wife, Cazandra, started to experience complications, so her medical team admitted…