Columns

Sometimes I hear other women joke about their husbands being their “extra child,” and I can’t help but nod in understanding. Living with Jared, who has severe hemophilia B and a seizure disorder, means I occasionally slip into caregiver mode with him, too. But here’s what might surprise you:…

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…

When I was diagnosed with hemophilia B and von Willebrand disease as a child, there were no choices in terms of treatment strategy. Treatment for me came in the form of intravenous blood products administered only in the hospital. Fast-forward to today, and I’m fortunate to have options…

My alarm rings every day at 7 a.m. I get out of bed, brush my teeth, take my medications, and start my day. As the coffee maker begins to brew a fantastic cup of decaffeinated piñon coffee, I take my girls — my dogs, Laggie and Hildie — outside. I…

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…