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…

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia. In his elementary school years, he struggled…

Women with hemophilia and other bleeding disorders are more likely to experience postpartum hemorrhage and other bleeding problems related to pregnancy and childbirth than those without such diseases, a population-based study from Canada reports. Findings “showed that women with inherited bleeding disorders are at increased odds of [postpartum hemorrhage]…

A person like me, with bleeding disorders like hemophilia and von Willebrand disease, can incur staggering expenses. The cost of medications alone can soar into the thousands of dollars per dose, and multiple doses are frequently required to manage bleeding episodes effectively. In 2019, I faced the…

Over seven years of follow-up, a single dose of Roctavian (valoctocogene roxaparvovec-rvox) sustainably reduced the yearly bleeding rate in adults with severe hemophilia A by up to 96%. That’s according to an update on a Phase 1/2 clinical trial (NCT02576795), launched in the U.K. in 2015, that’s…

When my youngest son, Caeleb, was 8 years old, our family went on a trip that required him to use a wheelchair at the airport. His severe hemophilia A with an inhibitor had caused persistent joint bleeds, which resulted in significant pain and limited mobility, as well as…

Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…