I’m diligent about oral healthcare. I use an electric toothbrush, floss every day, and visit my dentist every three months. My reasons for this diligence are many, but mostly I am afraid of bleeding from dental procedures. Mouth and gum bleeding are common for those living with von Willebrand…

There was a time when I couldn’t make plans because hemophilia was the center of my life. Vacations were dreams, family outings were few and far between, and the mundane happenings of everyday life were nonexistent. There was no sense of complacency. Every waking moment was consumed with the…

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…

Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a…

There is no shame in raising the white flag when caregiving challenges become too taxing. The white flag, an international symbol used when someone seeks a truce or ceasefire, usually is the last recourse after a long list of possibilities has been exhausted. For a parent or caregiver, it…

A few years ago, I went to a tattoo convention. Before I could enter, I was required to sign a liability release. The form said that people with bleeding disorders (and a long list of other conditions) should not get tattoos. Needless to say, I am not always a…

Many people see spring as the season for cleaning. Winter months call for homes to be closed tightly to keep the heat in and the winter chill out. Spring allows for the opening of windows to clean the soot and grime that accumulates over the colder season. I normally do…

Early in the life of our son “MacDonald the Elder,” we came face to face with one of our first major medical decisions: deciding which factor product to infuse. By the time our firstborn was 2, we had chosen our hematologist, survived a first bleed, and taken a trip…

When I was a young girl, I sat next to my father while he self-infused. I handed him his supplies — butterfly needles, syringes, alcohol, cotton, and medical tape — as he needed them. I watched every step. The factor was mixed, then drawn into…

Our world is changing. Shelves are partially stocked, hugging friends is discouraged, church services are online, and we study and work remotely. We crave connection. Things will improve eventually, but that seems a lifetime away. Finding routines and things in our lives that are “normal” is not always easy,…