The U.S. Food and Drug Administration has approved Novo Nordisk’s Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in adults and children with hemophilia B. Rebinyn, sold under the brand name Refixia in the EU, is a replacement therapy that had originally…

My husband, Jared, and I are both in our late 20s. In a few months, Jared will be turning 30, and I will follow next year. I used to fear the day I would reach the big three-oh, but now I am excited. I view the 30s as a decade…

As a person with multiple bleeding disorders, I’m an expert at removing blood from many materials, including carpet, clothing, and furniture. Sometimes the blood wins and will ruin a new shirt. Although I’m in my 50s, a blood stain can still get the best of me, as happened last…

The extended half-life replacement therapies Eloctate and Alprolix can be used to effectively manage bleeding during surgery in people with hemophilia, according to a new study based on Phase 3 clinical trial data. These findings highlight the “efficacy and safety of these products in a broad age range of…

Earlier this week, I stopped the car and let my youngest son, Caeleb, out for his first day as a junior in high school. I looked at him and told him that I loved him and that this year could be the start of something extraordinary. His laugh let me…

My youngest son, Caeleb, is 16 and preparing to begin his junior year in high school. School has been difficult for him since before kindergarten. With complications from hemophilia and an inhibitor, he missed numerous days of school through his third-grade year, which caused him to…

Immune checkpoint inhibitors (ICIs) used for cancer treatment may be associated with an increased likelihood of developing acquired hemophilia A, according to an analysis of an adverse events database. Although the small number of reports do not confirm that these therapies are causing the bleeding disorder, early identification and…

My daughter’s nanny left last week for a two-week vacation to her hometown. Since then, my husband, Jared, and I have been getting by without an extra pair of hands to help with chores and childcare. So far, it’s been a tiring, albeit interesting, journey. Ever since we became a…

When my first son, Julian, was born in 1996 and diagnosed with severe hemophilia A, I thought my world was ending. I expected to give birth to a healthy baby boy. I never dreamed he’d have a medical condition. I went through the stages of grief: denial,…

One of my current goals in life is to become wealthy. I cannot deny that I need more personal finances than I currently have to sustain my family and live a balanced and fruitful life. As a carer to a husband with hemophilia and a seizure disorder while…