I have big dreams for my sons. I want them to go to college, have successful careers, and find loving partners. I hadn’t thought that these things would be out of reach for either of them. But I did believe at one time that my mighty warrior Caeleb would be…

An 87-year old woman with acquired hemophilia A (AHA) showed no adverse events or major bleeding events after starting on Hemlibra (emicizumab). The findings suggest that Hemlibra may be a better option for bleeding prevention in AHA patients than bypassing agents, the team said. The study, “…

BioMarin Pharmaceuticals is planning to submit marketing authorization applications to the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) seeking approval of valoctocogene roxaparvovec, its investigational gene therapy for the treatment of adults with hemophilia A, before the end of the…

My wife and I were trying to find the perfect gift for one of our favorite people. We needed to find a bow tie, but not just an ordinary, humdrum kind. It must have a road map from one place to another. Our friend, who happened to be one of…

My 13-year-old son Caeleb, who had severe hemophilia A and an inhibitor, has not had a bleed in five years. For three of those years, he received a daily infusion with a plasma-derived product, and for the past two years, he has been on a treatment that…

Bayer is recalling two lots of product vials that have been wrongly labeled as Kogenate FS antihemophilic factor (recombinant) 2000 IU, when in reality they contain Jivi antihemophilic factor (recombinant) PEGylated-aucl 3000 IU. Both Kogenate (BAY14-2222) and Jivi (BAY 94-9027) are factor VIII replacement therapies…

A few days ago, I gave my husband, Jared, a factor IX infusion for a back bleed. It wasn’t so bad that he couldn’t move around, but in his words, it felt “annoying.” He was already suspicious about it the night before, but he decided to wait it out,…

Last week, I did something I never dreamed I would do: I taught “MacDonald the Younger” how to ride a bike. At 13, he is considered a senior statesman in our neighborhood. Other children learn at age 5 or 6 how to balance on two wheels and head down the…

When your children move into adulthood, managing their bleeding disorder becomes their responsibility. I have worked hard to prepare my adult son. He says “adulting” is not fun. I laugh and tell him that he’s joined the club. He has ordered his own factor since middle school, but I…

I’ve recently taken to collecting pearls. It started as a stock-obtaining activity for the jewelry business I run with my husband, Jared, who has hemophilia. It has since grown into a full-fledged personal obsession. This means I’ve been making a lot of sentimental purchases, but I have absolutely no regrets.