I’m happy to finally be an official member of the Father’s Day club. I’ve learned much from the way my own family raised me. It’s an uphill battle raising our daughter Cittie with the occasional bleed dragging me down. But seeing her mature so quickly…

Twenty-three years ago, my life changed dramatically. I became a mom. My firstborn, Julian, entered the world screaming at the top of his lungs with a head full of crazy black hair. I imagined him thinking, “Put me back in!” When he was laid on my chest, I was overcome…

I recently had the opportunity to spend the afternoon with a group of teens from our local bleeding disorders organization, HACA, which stands for Hemophilia Association of the Capital Area. Some of these kids have gone to camp together for years, and some were brand new to the group.

I work as a pastor in the United Methodist Church. One of the many challenges of participating in a denomination that calls ministers to move quite frequently in an itinerant system is the continuous upheaval regarding medical care. For those who live with chronic issues, picking up stakes and heading…

Hemophilia takes a toll not just on the life of the individual who struggles with the disease, but also on the family unit. It is not easy to have a genetic disorder as a life focal point that does not go away. When a woman has hemophilia, it…

I am a believer in the benefits of summer camp — hemophilia camp to be specific. Children with bleeding disorders across the U.S. have the opportunity to spend time away from home and participate in activities they may not usually experience. Hemophilia camp is a place where kids can…

The emotional toll of the “tainted blood era” is still vivid in the minds of healthcare professionals who felt helpless to stop the spread of epidemics among patients receiving treatment for blood disorders in Canada during the 1980s. Learning from these mistakes and developing support programs to help clinicians overcome…

I have a confession: I hate to self-infuse. I am really bad at it. Well, at least most of the time I am. The multitude of blown and missed veins over the past few years have synthesized to wholly deflate my confidence with this critical skill.  …

The toughest part about moving to a new city or state is locating health providers that are covered (most likely) by a new insurance plan. It’s difficult for families with hemophilia, like ours, to find pediatricians and internists. But dentists are by far the most challenging to locate. Fellow…

Living with a chronic bleeding disorder brings a whole new set of words into our vocabulary. Around my house, when it is time to infuse, we say, “Hey guys, its time to get liquored up.” While that may sound odd, our word choices help to remind us that each treatment…