“Pain” is a short, four-letter word, but its meaning is complex for those affected by chronic illness. For example, my youngest son, who lives with severe hemophilia, also known as factor VIII deficiency, once described the feeling of an internal bleed as sharp needles continuously attacking a joint.
My adult son, Julian, came home for Thanksgiving. When he walked into the house, I sensed that something was wrong. First, he told me he was in the early stage of a bleed in his leg. He then told me he left his factor at his home, five hours…
My son, Caeleb, recently had his first appointment with a new dentist following our recent move, which led to our first experience with an old concern: post-traumatic stress disorder (PTSD). Caeleb, 15, has had a fear of needles for many years, and as part of his hemophilia…
As I slowly approach the big three-zero (two more years to go!), I can’t help but reflect on the state of my health. Physical symptoms scare me now more than ever, and I want them checked as soon as possible. I’ve been trying to commit to healthier habits as well…
I cut my thumb above my knuckle a few weeks ago. It didn’t seem like a big deal, but five Band-Aids later, I began to wonder. A few hours later, I noticed my knuckle was swollen, painful, and a bit blue. My thumb wouldn’t bend, and the swelling extended down…
Some years ago, when my youngest son, “MacDonald the Younger,” was about 7, he had an internal bleed into his right knee just before Thanksgiving. I was scheduled to lead a “Thanks Living” service that Tuesday, but we quickly realized we would be celebrating the holiday in a hospital…
Julian was only a baby when he received his hemophilia diagnosis, and it came as a big shock to me. I remember how much I enjoyed the newness of having a beautiful son who looked perfect. Then, the first bruise appeared. Julian has severe hemophilia A, also known as…
Advocacy is a beautiful thing. Many people find it fulfilling because it’s a way to show kindness to others while championing something close to one’s own heart. But advocacy isn’t always easy. I’ve come across some disability advocates whose dedication to the cause was tested by their experiences…
Welcome to “Hemophilia and Me.” Former Hemophilia News Today columnist Shellye Horowitz, who wrote “The Forgotten Factor,” inspired me to dust off my journalism degree and share my own story, and now I’m grateful and honored to join a team of inspirational rock star writers. I plan…
We live in a world that is loud and overwhelms us at every turn. The noise can drown out our own ability to think, leaving us frightened and unsure what our next step should be. Because I have been a caregiver to two sons with hemophilia and have to deal…
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