When our youngest son, whom we affectionately call “MacDonald the Younger,” was diagnosed with hemophilia, my wife and I didn’t know how to respond. We were in a state of shock and hadn’t thought something like this was possible. Later, we learned that my wife was a hemophilia carrier,…
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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…
You are not alone. Coping with hemophilia as a patient, caretaker, or medical provider can seem overwhelming at times. When I am overwhelmed, have a question, or just want to talk to someone who I know will “get it,” I reach out to my “blood sisters” and…
When my husband, Jared, and I first started our online jewelry store, we knew our business was not going to be like other enterprises in the market. He lives with hemophilia and epilepsy, while I am diagnosed with anxiety and depression. We feared that bleeds, seizures, and mental breakdowns would…
From early on, we find success by developing a strong work ethic. Some of us come by it naturally, while others learn the value of working hard and doing the best job they can do. I realized that discipline brought great rewards, both musically and academically. When I failed to…
Sometimes I am overwhelmed when I think about the hemophilia journey my sons are traveling. My first memories about this date to June 1996, when my first son, Julian, was born and diagnosed with severe hemophilia A. The early days of learning how to access a port, and later,…
Lately, I’ve been finding myself in need of more “alone time.” Now that I am a mom to a hyperactive and curious toddler, most of my days are spent listening to nursery rhymes on repeat, chasing our baby girl and making sure she doesn’t hurt herself while exploring her surroundings,…
My family loves dogs. My wife and I have never known married life without a beloved pet. They continue to bring us joy, while at the same time imparting valuable life lessons. Our pets teach us to care for something more than ourselves. Our puppies need us as much as…
My chronic pain is not caused by a bleeding disorder, but it does give me perspective on the pain my youngest son, Caeleb, endures from hemophilia. Friends stopped by on a recent afternoon to meet our new puppies, and I shared a homemade pie that was fresh from the oven.
When I have the opportunity to gather with my brothers and sisters from the hemophilia community, I notice we all have stories to tell. When you live with a rare disease, you are bound to have unique interactions with medical providers, family members, friends, and colleagues. These interactions range from…
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