Columns

I’m looking forward to attending the Hemophilia Federation of America’s annual symposium, running today through Saturday. I’ll be among the community I consider family. But it’s been a few years since I attended a large conference. I’m excited about reconnecting with old friends, but I’m also a bit…

Managing money is an essential skill every couple must learn. From the moment they decide to live together, and especially after they decide to walk down the aisle, the health of their finances will always be a huge determinant of their happiness. This is true even if one (or…

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…

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…

“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…

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…

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…

There are moments in our lives that are seared into our memories. Some of those in my life include getting married, giving birth, starting a new job, and bringing my now-husband to meet my family. One vivid memory is when my obstetrician told me that I would soon know more…

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.

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.