When people learn that their loved one has hemophilia, they often jump straight to a mental checklist of risks: bleeding, injuries, factor, emergency plans. Safety becomes the headline. Over time, it can become the lens through which every choice is evaluated. But for many people…
Columns
I wasn’t doing anything unusual when it happened. I wasn’t exercising, rushing around, or kicking someone. I was simply walking around my house when I felt a sudden, sharp pain in the ball of my foot. Within seconds, it began to swell. A bruise appeared, purple, unmistakable, and completely uninvited.
The world often feels like an amusement park ride that does nothing but turn in circles, and we must gather the courage to get on. At first, everything spins at a moderate pace, but as the ride continues, the pace picks up, and suddenly everything spins so fast we can…
I love making quilts. Some people wonder why anyone would buy new fabric just to cut it up and sew it back together. It might sound odd, but for quilters like me, creating something by hand brings comfort, joy, and satisfaction. There is a rule when preparing to make…
Parenthood is full of surprises. Some are delightful, some are exhausting, and some are completely unpredictable. Add hemophilia to the mix, and everything becomes a little more complicated. Over the years, I’ve learned that balancing relationships, parenting, and a chronic condition is not about perfection. It is about understanding…
The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…
The start of a new year often brings talk of ambitious goals, including growth, progress, and milestones we hope to achieve by year’s end. My husband, Jared, and I have those goals. In fact, we’re approaching 2026 with a specific list of things we want to build, maintain, and improve…
In a previous column, I shared Tara Blakely’s journey to earning a black belt — an accomplishment nearly 30 years in the making, interrupted by life, motherhood, undiagnosed hemophilia, and everything in between. Impressive, certainly. I was equally impressed by her 110-pound weight loss. I’ve struggled with my…
Planning for what happens after I die is such an uncomfortable topic that I want to run and hide. Somehow, just thinking about death makes it feel more real, even though I should have years of life left. Yet, I know that hemophilia A makes my life more fragile.
Living in the Philippines has shown me how differently people understand illness depending on where and when they grew up. In many rural provinces, even something as common as high blood pressure gets mismanaged. Doctors may not have specialized training. Medical equipment is scarce. And reliable health education often depends…
Recent Posts
- What looks good and feels right: Getting dressed with a bleeding disorder
- Hemlibra outperforms ITI in controlling bleeding in hemophilia A children
- Holy Week brought back memories of the power of kindness
- Music helped us find joy after my oldest son’s hemophilia diagnosis
- Most men with hem A bleed-free 5 years after 1 Roctavian dose
