It’s a struggle to balance life with two disorders. I need to take daily medications for epilepsy while also self-infusing to treat internal bleeds. I recently suffered a horrible epileptic episode. My wife, Cza, and I were walking with our baby, Cittie, when I felt a strong aura warn…

There was a time when hemophilia ruled my family’s every waking moment. My husband and I set out to accomplish two goals each day: going to work and taking care of our youngest son, Caeleb. It was nice when Caeleb could go to school for an entire day, but…

The recent Rare Blood Disease Summit sponsored by Genentech highlighted a critical perspective pertinent to me: “Mild is the most dangerous word in hemophilia.” I wholeheartedly agree with this statement as a person with mild hemophilia B and von Willebrand disease. Mild hemophilia is distinguished…

With my oldest son, who is now 21, I never worried about limitations. He played soccer for a season, and that was the extent of his athletic pursuits. He just did not like sports and to this day, he does not understand the basics of a football game,…

Two new patients in the U.S. have received Hemgenix (etranacogene dezaparvovec), the first gene therapy to be approved for hemophilia B, per new reports. The therapy was first administered last year in May to a patient at UC San Diego Health, per a University of California, San Diego, news…

Thank goodness for the great friendships that we forge along the way. Those of us who live with chronic illnesses learn the most about caring for our loved ones from those who are in our communities. While teaming with medical staff is crucial to the diagnosis and treatment…

Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders. Expenses Most years, I’m sure to hit the $7,000+…