Last week, I had two dental procedures that required pretreatment because of my hemophilia B and von Willebrand disease (VWD). After prepping one of my teeth for a crown, my dentist took an X-ray that revealed an abscess, which meant I needed a root canal, too. Both procedures…

Von Willebrand Disease (VWD) is a genetic blood disorder where the person affected is deficient in a protein that helps blood clot — the Von Willebrand factor.  According to the Hemophilia Federation of America, the disease is genetic and often takes a while to be diagnosed as the…

One of the unexpected issues I struggled with when my youngest son, Caeleb, faced many prolonged hospital stays due to internal bleeding episodes was loneliness. My wife, Cazandra, and I divided our time between the hospital and home life with our older son, Julian. As a result, we…

Twenty-three years ago, my life changed dramatically. I became a mom. My firstborn, Julian, entered the world screaming at the top of his lungs with a head full of crazy black hair. I imagined him thinking, “Put me back in!” When he was laid on my chest, I was overcome…

I was honored to speak with my husband last week at the National Bleeding Disorders Foundation‘s annual Bleeding Disorders Conference, held this year in Atlanta. It was a memorable experience to share our story with fellow community members. While I’ve spoken at conferences nationwide for many years,…

As we begin a new year, I can’t help but feel the power of hope permeate the air as conversations turn to new opportunities. Those of us in the bleeding disorders community long for new treatments that offer possibilities for a better quality of life. We pray that the…

Factor VIII (FVIII) levels in the bloodstream of men with severe hemophilia A treated with the investigational gene therapy Roctavian appear to be influenced by regulatory molecules involved in F8 gene activity and FVIII protein folding and release, a study reveals. Researchers also found a dose-dependent relationship between…

My youngest son, Caeleb, and I made the 500-mile journey from our home in New Mexico to Alpine, Texas, last weekend to see my oldest son, Julian, in his professional theater debut. We drove there on Friday evening and returned on Saturday; on Sunday morning, I had to summon…

Repetitive movements, fitness level, and prolonged and competitive physical activity are among the factors that raise bleeding risks for people with hemophilia taking part in such activities, a study based on a survey of physical therapists in the U.S. reports. Duration of training and safety equipment were seen as modifiable factors,…

I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…