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…

Winter is one of my favorite seasons. I enjoy the crispness in the air and wearing sweatshirts and warm, fuzzy socks by the fireplace. My son Caeleb enjoys the same things about winter, but his hemophilia and chronic pain complicate his relationship with the season. The morning is the most…

BioMatrix Specialty Pharmacy has announced this year’s winners of its memorial scholarship program, designed to help people with hemophilia and other bleeding disorders pursue higher education. Six scholarships, each worth $1,000 and honoring people who made “unique” contributions to the bleeding disorder community during their life, are awarded…

“Money can buy happiness.” My younger self would have refused to buy into that idea. I would have retorted with a long list of nonmaterial things that gave me pleasure. After all, Jessie J sang in her 2011 hit song “Price Tag” that, “It’s not about the money,…

Garrett Hayes, who is studying medicine in Texas and has a severe form of hemophilia A, is the first recipient of the National Hemophilia Foundation’s (NHF) Jason Fulton Memorial Scholarship. The scholarship honors the memory of Jason Fulton, a hemophilia patient who died in 1995 at age…

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…