My husband, Jared, doesn’t need a gym anymore, or dumbbells, or fancy machines. These days, all he needs is the floor, a bit of space, and his body. He still loves the gym and would gladly pick up free weights when the opportunity arises, but there’s something quietly powerful about…
HemoWife - a Column by Allyx Formalejo
Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it. Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability…
My husband, Jared, lives with hemophilia B and a seizure disorder. He also lifts weights, performs bodyweight workouts, and swims. Now and then, someone will see him doing laps in the pool and ask, “Are you a professional?” To which he responds, “No, the water just loves me more.
When my husband, Jared, was growing up, people in his community didn’t always speak kindly about mobility aids. Crutches, wheelchairs, and canes were often seen as signs of helplessness, things you turned to only when you’d run out of options. That perception stayed with him well into adulthood. He did…
My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…
Lately, I’ve been thinking about what it means to be an expert. In my work as a virtual marketer and strategist, the word gets used all the time. People in my profession are expected to act like we know exactly what we’re doing. We’re told to speak with…
I recently stumbled across a passage on social media referring to relationships: “If you want a garden? Take care of it. You want love? Love them.” Something about those simple words struck a chord with me. Instinctively, I forwarded it to my husband, Jared. “This is exactly why I’ve been…
I’ve been writing about life with my husband, Jared, who has severe hemophilia B and epilepsy, for many years now. In doing so, I’d often refer to myself as a caregiver in passing. But here’s something that might surprise you: This column is the first time I’m openly…
Last weekend, our daughter graduated from kindergarten. As she proudly crossed the stage, I found myself reflecting on how far we’ve come — not just in terms of our child’s academics, but as a family living with hemophilia. As she received her diploma and later danced through musical numbers…
Sometimes I hear other women joke about their husbands being their “extra child,” and I can’t help but nod in understanding. Living with Jared, who has severe hemophilia B and a seizure disorder, means I occasionally slip into caregiver mode with him, too. But here’s what might surprise you:…
Recent Posts
- FX activator may help with bleeding control in hemophilia A and B: Trials
- Paying attention to how we treat children with an invisible illness
- Celebrating hemophilia progress while remembering our community’s past
- Single infusion of Roctavian linked to fewer bleeds in hemophilia A
- I am a proud dad, even when I’m concerned about my son
