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…

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…

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…

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…

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…

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…

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…

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…

A single dose of Freeline Therapeutics’ experimental gene therapy FLT180a increased the levels of factor IX (FIX) — the missing clotting protein in hemophilia B — for up to around 3.5 years in nine out of 10 men with moderate-to-severe disease. That’s according to data from the Phase…