Columns

I sat in a hotel ballroom with hundreds of people who gathered to pay tribute to their loved ones. The names and pictures of the dearly departed appeared on giant screens at the front of the room. Many people had their cellphones ready, anxiously waiting to capture the image…

I recently had the honor of interviewing bodybuilder L.A. Aguayo over Zoom. He is 34 years old, has severe hemophilia B, and recently took second place in an international bodybuilding competition, the Arnold Amateur. I highly recommend his inspirational autobiography, “Finding Purpose in the Pain.” In his book,…

This past week my adult son, Julian, made a decision that I didn’t like. I wanted badly to tell him how I felt and that his choice may not be in his best interest. I don’t think it’s essential to mention what he did as much as my reaction to…

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…