It’s infusion day again! Pens, inks, and assorted notebooks leave our bedroom work desk to make room for a makeshift medical setup. Medicine vials, alcohol swabs, and needles take their place. For my husband, Jared, who lives with severe hemophilia B, this is more or less a monthly routine.

Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…

As I sit at my computer, fatigue seeps into my bones. The intense heat here in the Philippines, combined with the side effects of my new acid reflux medication, amplifies my exhaustion. Mild tension headaches make looking at bright screens unbearable, rendering work nearly impossible. My body’s clear message is:…

Switching to Jivi (damoctocog alfa pegol), an extended half-life replacement therapy, from Kovaltry (octocog alfa), may help adults and children with severe hemophilia A experience fewer or no bleeds, according to a Canadian study. “Data from this study provide routine clinical evidence supporting the use of [Jivi]…

During the December holiday season, while visiting family in Illinois and Wisconsin, I had an unexpected dental emergency: A crown cracked and fell out. Unfortunately, complications arose when I contracted COVID-19, causing delays in addressing the issue. When I finally managed to schedule an appointment for the crown…

This week, I’m doing something I’ve never done before: stepping into the ring of politics and lobbying my congresspeople. Many of those in the bleeding disorders community gather annually in Washington, D.C., to meet with U.S. representatives and senators. The goal is simple: to remind legislators that medical care…

When used long term, Novoeight (turoctocog alfa) safely and effectively prevented and treated bleeding episodes in people with hemophilia A in Japan, according to a real-world study. In fact, Novoeight successfully treated 91.4% of the reported bleeds, and kept bleeding under control in 85.7% of surgical procedures. Moreover,…

There’s a stigma surrounding those who use wheelchairs. To most, they evoke pity: “Oh, how awful to be confined to a wheelchair.” Perhaps it’d be awful for the person making the statement, but is it awful for the person using the chair? When an older adult is in a wheelchair,…

As someone living with hemophilia B and epilepsy, my husband, Jared, has faced numerous health challenges throughout his life. From medical tests to hospitalizations, he’s endured his fair share of pain and discomfort. So when I recently confided in him about an unsettling taste lingering in my mouth…

In a recent blog post on the Hemophilia Federation of America’s (HFA) website, HFA board member Joe Markowitz, 73, who has hemophilia, shared his perspective. He believes that life today is favorable for those with hemophilia, and he encouraged young families to overlook what he perceives as the…