Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

I’m a homebody. I work from home most days, and when I’m relaxing, I’m quilting, sewing, or weaving. The gratitude I have for my home and my activities there is overwhelming in the best of ways. While the pandemic has caused many to feel trapped, unable to move about the…

There was a time when I couldn’t make plans because hemophilia was the center of my life. Vacations were dreams, family outings were few and far between, and the mundane happenings of everyday life were nonexistent. There was no sense of complacency. Every waking moment was consumed with the…

March is Bleeding Disorders Awareness Month, when patients and families who live with bleeding disorders post facts on social media and share their stories to educate those with little understanding of how a chronic illness affects daily life. I have participated in numerous events to educate the community, and this…

I went to college to become a teacher. Actually, to become a middle school band director. Four years of college were great, but student teaching was how I learned to teach. Two excellent supervisory teachers helped me find my way, answered questions, and taught me useful lessons by their example.

My youngest son, Caeleb, called me to pick him up early from jazz band rehearsal last week. I could hear a hint of panic in his voice. Caeleb has complained of arm pain over the past few months, but it never seemed to be a big problem. I hoped it…

It’s hard to believe that my 16-year-old son, Caeleb, is moving into adulthood. He is not approaching adulthood, but moving toward it, and he still has much to learn about managing hemophilia. At a recent annual appointment at the hemophilia treatment center (HTC), a nurse quizzed him about what…

I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic,…

Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to…

I still need to select my one-word resolution for 2022. I usually have an idea by the end of November, but 2021 was busy and fruitful, and thinking about a word was not on my radar. I relished every moment of the year because I genuinely found peace. Instead…

A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…