I am a big list maker. Each day I start with a list of tasks that I need to accomplish. I find it gratifying to cross through each item once I’ve completed the job. Grocery lists, errands, and meal ideas are some of the elements on my agenda. I also…
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Getting diagnosed with hemophilia is a whirlwind. It doesn’t matter if someone is diagnosed at birth or in their 40s: Their world is turned upside down. It is terrifying. Life is changed forever. I feel Father Anthony DeMello put it best in his…
I look into my son’s eyes and see beauty. I see the vibrant green, which fades into a blue that rivals the sky. Down in the lower left part is a spot of brown that never changes. His eyes give us a reflection of his soul. Though change is all…
A Letter to Those Who Mean Well
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.
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 Thankfully, we now live in a world that is more accepting of people who live differently than society’s outdated views of assigned gender.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…
Recent Posts
- We can find signs of calm in the storm if we remember to look
- New data suggest gene therapy may reach more hemophilia B patients
- How life changes when the caregiver switch flips on
- January’s reset means the system restarts, but our bodies do not
- People with hemophilia face 46% higher risk of bone fractures