Quarters. I ended up with a fistful of quarters the other day and had flashbacks to the early days of hemophilia. When my firstborn son came into the world, we lived in Houston. In the early days of Julian’s hemophilia diagnosis, trips to the Texas Medical Center were…

Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others. While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want…

A person like me, with bleeding disorders like hemophilia and von Willebrand disease, can incur staggering expenses. The cost of medications alone can soar into the thousands of dollars per dose, and multiple doses are frequently required to manage bleeding episodes effectively. In 2019, I faced the…

Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to find knowledgeable healthcare providers. Growing up with an undiagnosed bleeding disorder meant years of dismissed symptoms. I was in…

I am not a fan of roller coasters. Dropping straight down in a car on a wooden track makes me feel like my heart has left my body. Why would anyone want to feel that way? However, I have one exception: the Rock ‘n’ Roller Coaster Starring Aerosmith…

I have never heard anyone say, “I wish I could relive middle school.” It is a time when bodies rage with hormones and kids are gangly and awkward with acne and questions. It is also a time when grace is not extended to others. Kids can be mean.

To the father of my daughter, Thank you for being present from the very beginning of my pregnancy — when those two lines first appeared, and you told me you didn’t know how to feel (despite us having planned everything out). Thank you for soldiering through those…

I knew that I wanted to teach theology at the university level. I prepared a great résumé and felt academically equipped, having received my doctorate in ministry. I applied to dozens of schools, but no one offered to hire me. I questioned my abilities and couldn’t understand why I…

Three U.S. bleeding disorder patient organizations recently received funding support for their patients’ rights advocacy campaigns. The Milwaukee, Wisconsin, headquartered Great Lakes Hemophilia Foundation (GLHF), the New York City Hemophilia Chapter (NYCHC), and the Columbus, Ohio-based Ohio Bleeding Disorders Council (OBDC) have been…

My youngest son wanted to play baseball. “Come on, Dad!” he pleaded. “I will wear a helmet and knee pads and anything else.” I wrestled with how to answer him. My son had a considerable complication called an inhibitor. Failure to make the correct decision might cause a horrific bleed…