My husband, Jared, often spent his childhood navigating two very different worlds. In one, he was a regular kid with big dreams and boundless imagination. In the other, he was a young boy living with severe hemophilia B, which meant being confined to hospital beds for weeks while receiving…
Columns
I don’t recall when I met Debbie Murray, but I remember the impression she left on me. Her frustration with the long and challenging journey to a proper diagnosis and effective treatment of her hemophilia was unmistakable. Debbie, 56, resides in Norwood, a village in the northernmost part of…
I’m a pastor in the United Methodist Church, where the one constant we share is change. In our denomination, pastors serve on an itinerant system, which means that the cabinet (the bishop plus the district superintendents) chooses which pastors will serve in different locations. As a result, I’ll…
When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is really unusual. It’s rare for women to have hemophilia!” This ubiquitous misconception is the bane of every female hemophiliac’s existence. It often stands in the way of women and…
When my husband, Jared, was younger, he was “the sick child.” With severe hemophilia B and a seizure disorder, he stood out like a sore thumb — or a rare gem. In any case, he was distinct as the child who required special accommodations at school or who missed…
I have to admit, I was captivated by Hemophilia News Today‘s Facebook page during the final days of December, eagerly following its countdown of the year’s top 10 most-read columns. It was an incredible honor to see that my columns secured eight of those 10 spots. Each one…
On Monday, my youngest son, Caeleb, will begin his second semester as a freshman at the University of New Mexico. Last night he asked me if I had a few minutes to talk. I might not be the sharpest tool in the shed, but when my 18-year-old asks outright for…
The start of a new year often brings a surge of enthusiasm, hope, and resolutions. We might set ambitious goals like, “This is the year I lose weight.” Or, “This is the year I go to the gym five days a week.” Or, “This is the year I mend a…
Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?” Medical assistant: “We just got your baseline bone density tests back and they show you…
My husband, Jared, lives with severe hemophilia B and a seizure disorder. Despite these challenges, he’s active in ways that many people wouldn’t expect. He swims, lifts weights, and plays badminton. He can also keep up with our 5-year-old daughter, who is a huge ball of energy. We recently…
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