During the four weeks leading up to Christmas, many in the Christian tradition observe a season of waiting called Advent. This period of anticipation encourages us to take a fearless and moral inventory of our lives so we can invite the birth of Christ into our hearts properly. We…

Getting diagnosed with a bleeding disorder can be difficult. I am somewhat fortunate. At age 10 in 1975, I was diagnosed with multiple bleeding disorders. But that doesn’t mean I didn’t have bumps and challenges along the way. Testing, treatment, and classification of bleeding disorders have changed dramatically since…

After 18 months, the investigational gene therapy AMT-061 (etranacogene dezaparvovec) continued to prevent bleeds in men with moderate-to-severe hemophilia B, according to top-line data from the Phase 3 HOPE-B clinical trial. The trial has met its pre-specified primary goal, with control of all bleeds by 18 months not…

As a pastor, I often greet parishioners at the church door. I want to share meaningful words of assurance, but unfortunately, I must move from one person to the next in a quick, almost rapid-fire progression to avoid holding up the line. In-depth conversations, which I dearly love, must wait…

Doctors often overlook female problems caused by hemophilia. I have many examples of this concept, but few are as upsetting as when I almost ruined a family vacation in 1990. Precancerous cells had invaded my cervix and needed removal. The procedure terrified me! I gathered several opinions, eventually landing…

“Pain” is a short, four-letter word, but its meaning is complex for those affected by chronic illness. For example, my youngest son, who lives with severe hemophilia, also known as factor VIII deficiency, once described the feeling of an internal bleed as sharp needles continuously attacking a joint.

My adult son, Julian, came home for Thanksgiving. When he walked into the house, I sensed that something was wrong. First, he told me he was in the early stage of a bleed in his leg. He then told me he left his factor at his home, five hours…

My son, Caeleb, recently had his first appointment with a new dentist following our recent move, which led to our first experience with an old concern: post-traumatic stress disorder (PTSD). Caeleb, 15, has had a fear of needles for many years, and as part of his hemophilia…

A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia. The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they…

As I slowly approach the big three-zero (two more years to go!), I can’t help but reflect on the state of my health. Physical symptoms scare me now more than ever, and I want them checked as soon as possible. I’ve been trying to commit to healthier habits as well…