As my husband, Jared, and I grow deeper in our marriage, the reality that we will spend our entire lives with chronic illness becomes increasingly clear. Jared has severe hemophilia B and a seizure disorder, which I learned about when we started dating. Meanwhile, I was diagnosed with…

Treatment with Hemlibra (emicizumab) improved joint health in people with hemophilia A participating in the Phase 3 HAVEN 3 trial, with the most pronounced improvements seen in those younger than 40 or in patients who had joints with frequent bleeds. Findings were detailed in the study “…

The pandemic changed the world. From working in an office to working remotely, staying connected through technology, and shopping for necessities online, the world managed to keep moving. I’m grateful for the conveniences and adaptations that are now the norm, but I find there’s still an area where many are…

Older men with hemophilia report higher rates of anxiety, depression, and diabetes compared with the general U.S. population, a recent study reported. However, rates of heart-related health problems, such as myocardial infarction (heart attack) and coronary heart disease, were lower in hemophilia patients than in the general population. The…

As I write this, I’m battling my first major cough and cold since the COVID-19 pandemic started. Regular mask-wearing seems to have lowered our chances of getting sick, which is good. But now I’m no longer used to feeling ill. At the same time, my husband, Jared, is bedridden…

Switching to Hemlibra (emicizumab) can add more than $100,000 a year to healthcare costs for people with hemophilia A in the U.S. who were previously using preventive replacement therapies, according to a new analysis. “Increased use of [Hemlibra] may cause an increase in economic burden for payers without…

The age of 18 is when teens legally move from minor to adult status, becoming able to vote in the U.S. It’s also when kids graduate from high school and move on to the workforce or college. For me, 18 was not a milestone. It simply meant I was going…

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…