Columns

Last week, I had two dental procedures that required pretreatment because of my hemophilia B and von Willebrand disease (VWD). After prepping one of my teeth for a crown, my dentist took an X-ray that revealed an abscess, which meant I needed a root canal, too. Both procedures…

In my years of discussing my sons’ bleeding disorders here, I too have had a hereditary disorder: essential tremors, which I inherited from my mother’s side of the family. While my disorder isn’t life-threatening, several factors seem eerily similar to my sons’ struggles with hemophilia. My tremors don’t…

Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders. According to the group’s founder, Taylor Kane, whom I interviewed back in April, the campaign was created to combat…

As someone with attention-deficit/hyperactivity disorder, I crave a challenge. It doesn’t even have to be a significant one, just something that gives me a little feeling of accomplishment. A small win early in the day, such as solving a tricky problem, tidying a corner of my space, or…

We received some unexpected news this week from the University of New Mexico, where our youngest son, Caeleb, is a rising sophomore. Although we had thought he’d be able to move into a dormitory on campus this fall, it appears he’s still on a waiting list, and the chances…

In kindergarten, my teacher had a daily ritual: story time. My friends and I would race to the corner and sit “crisscross applesauce” on the boldly colored carpet, eagerly awaiting the story. Next to recess, it was the best part of the day. The teacher read with excitement, allowing us…

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — often attributed to Albert Einstein I live with a bleeding disorder, hemophilia A. Survival often is truly about attitude, optimism, and perseverance.

People often assume that loving someone with hemophilia — and in my husband’s case, epilepsy, too — must come with endless patience, unshakable optimism, and the kind of soft, gentle pity we reserve for those we imagine can’t carry their own weight. But mine is a different kind of…

“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…

The kitchen buzzed with energy. Cookies were in the oven, a skillet of deliciousness simmered on the stove, and fresh tortillas were being rolled out on the counter. When my oldest son, Julian, and I cook together, we’re like Fred and Ginger, knowing each step and anticipating…