“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with Hemophilia in November 2018. As a woman with hemophilia, I know about the struggle for legitimacy in a male-dominated disease space. What I…

On April 1, the U.S. Department of Health and Human Services (HHS) announced a restructuring that effectively eliminated the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention (CDC). For many, this news went unnoticed. But for those of us in the…

Last night, my youngest son, Caeleb, and I talked about our unique experiences with Easter egg hunts. My boy is now a 19-year-old man who is finishing his first year at the University of New Mexico. He enjoys studying cinematography and graphic design and hopes to find an internship in…

Over the weekend of April 4-6, I had the privilege of attending the National Outreach for von Willebrand (NOW) Conference in Phoenix. Hosted by Arizona Bleeding Disorders and sponsored by CSL Behring, the event brought together people affected by von Willebrand disease (VWD) from across the country to…

I took my youngest son, Caeleb, to the train station near our home this morning. He rides from our little town to downtown Albuquerque, about 30 miles from our house, to the University of New Mexico campus, where he’s a student. He has hemophilia and chooses not to drive.

I have vivid memories of visiting Grandma Jala. She lived in the little wooden house where she raised my dad and his three brothers after Grandpa died at a young age. The tiny house, worn by time, stories, joy, and sorrow, had a huge, adventure-filled yard. It had the flicker…

“Huge Estate Sale: Hoarder House!” the advertisement said, offering 4,000 square feet of floor-to-ceiling treasures. The former occupant was a retired psychology professor named Bill who reportedly let no one into his home. When he died, his relatives entered his home for the first time. Forcing the front door open,…

Life had been running smoothly for a while. No major bleeds, no medical scares — just the comforting rhythm of our daily routine. But as life with hemophilia goes, that peace was bound to be interrupted at some point. It came this time in the form of a…

As a hospice chaplain, I visit patients in homes and long-term care facilities. There is one facility I particularly enjoy visiting because I have a special relationship with the director of nursing. A couple years ago, I was speaking to a nurse about one of my patients when I noticed…

Sixteen years from symptoms to diagnosis. This statistic is quoted incessantly among women with bleeding disorders, describing the treacherous diagnostic journey we often endure. But what many don’t realize is that this figure came from one study of 75 women diagnosed with von Willebrand disease (VWD) who were registered…