Columns

Let’s Not Forget the Importance of Dental Care

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…

The Secret Is in the Refrigerator

I often tell people to check my refrigerator if they want to track the development of hemophilia care in my family. For example, when my sons were small, the medicine they required, factor VIII, took up a full refrigerator, requiring us to buy a second one. As for other…

Living a ‘Demi-normal’ Life With Chronic Illnesses

“Demi-normal.” It’s a term I’ve coined to describe how my husband, Jared, and I both live with chronic illness. Most people are familiar with the prefix “demi-,” meaning “halfway,” “almost but not quite,” or “to an inferior degree.” For instance, a demigod‘s status is above man’s, but…

Turning Gratitude Into Action on World Hemophilia Day

I am lucky to live in the United States, where medication to treat hemophilia and von Willebrand disease is easy to obtain. Had I been born in a developing country, I might not be alive today. My treatment includes injections of expensive blood-clotting medicine called factor. Access to…

I Tell My Son, ‘You Are More Than Enough’

My older son, Julian, and I share many interests. We are both musicians and sing the same voice part, lyric tenor. Many people who hear us sing together tell me that it’s difficult to determine who’s singing. Our voices blend as if they’re one instrument. Genetics has a lot…

Learning to Breathe Can Help Reduce Stress

Stress has been a constant issue for me. I struggle to manage it, but I’m improving. If I could jump into a time machine and travel back in time, I would tell my younger self to chill out and learn how to breathe. I am a self-employed digital marketing consultant.

Giving Thanks on the 4th Anniversary of My Column

In April 2018, I began writing this column. Over the four years that I’ve shared stories from my heart, I cannot believe that my family has endured many bad moments associated with hemophilia. Yet I’ve also chronicled the joyous times we celebrated, even in the middle of overwhelming darkness.