Dear Friend, We live in a world where people want to help each other. I know you mean well, but there are a few things I need you to understand. When I tell you that my son is having a bleed and is in pain, don’t feel sorry for me.
Columns
I grew up believing that it was impossible for a hemophilia carrier who was also a woman to manifest the condition. I had stitches five times before the age of 5. I limped through elementary school, in pain from physical education classes. I…
I have never been one to subscribe to traditional gender stereotypes. Thankfully, we now live in a world that is more accepting of people who live differently than society’s outdated views of assigned gender. Still, some of these old stereotypes persist. I grew up with a…
Oct. 7, 2019, came and went like any other day. Our family went about our business: my son went to school, and I sat at my desk, planning my next sermon. But the day was special. It was the birthday of my wife, Cazandra, and it might have gone unnoticed…
I’m starting to recover from my recent iliopsoas bleed. I’m irritated that my right hip isn’t as flexible as it used to be, but that’s a normal part of recovery. It’ll take me a while to regain the ability to move freely and easily. I’m looking forward to the…
Organizations such as the Hemophilia Federation of America and the National Hemophilia Foundation provide the bleeding disorder community with a wide array of resources, support, and platforms to connect with others. The National Hemophilia Foundation held its annual meeting recently, and I watched as friends in the…
Four years ago, I relocated to a rural community. My hemophilia treatment center (HTC) was six hours away, so I met with a local hematologist to come up with a plan for treatment. I am a woman. I was speaking to a female physician who specialized…
My daughter, Cittie, is now 8 months old. She has obvious likes and dislikes and is starting to develop habits and character traits. I can sense that she’s about to become a full-fledged toddler. Cittie hasn’t learned to express herself verbally. My husband and I still rely on behavioral clues…
Years ago, I watched my youngest son, “MacDonald the Younger,” as he struggled with recurring joint bleeds. Each episode took more of his mobility away. He could not extend his leg beyond 45 degrees because his knee was so full of blood, and he used a wheelchair for at least…
It Costs Nothing to be Nice
Last year was difficult for my mighty warrior Caeleb. Moving to a new school in a town where everyone knows everyone is not something you wish for as an incoming seventh-grader. This year was better until I discovered that a couple of boys were bullying Caeleb and he did not…
Recent Posts
- WHO resolution aims to address gaps in hemophilia care
- Learning how to infuse factor gave my family freedom, part 2
- Desire to help people after hemophilia diagnosis outweighs online uneasiness
- When it comes to genetic tests for hemophilia, don’t forget Grandma
- FDA may OK Hympavzi for children 6 and older with hemophilia A or B