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…

March is Bleeding Disorders Awareness Month (BDAM) and patients, caregivers, advocates, and other supporters are coming together to call attention to conditions like hemophilia and von Willebrand disease that impact more than 3 million people in the U.S. Bleeding disorders are marked by uncontrolled bleeding that occurs from a…

The singer onstage opened his mouth, and notes flew through the air, falling on the ears of everyone listening. His tone indicated a beautifully powerful lyric tenor voice as the song filled the space, hypnotizing the crowd. As he finished his first number, the crowd roared with joy. He…

The Marvel Cinematic Universe is part of today’s culture. Its movies take theatergoers to places never imagined. Iron Man, Thor, and Doctor Strange are a few of the characters that it brings to life, and each seems incredibly realistic. When I watch these movies, I can’t help but…

My younger son, Caeleb, struggled to get to his feet and go to physical therapy today. His right ankle has very little cartilage because of hemophilia complications, and he often struggles to get around without the assistance of a cane or walker. He looked at me and…