Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…
The Forgotten Factor - a Column by G Shellye Horowitz
Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…
It can be so easy to be mad, particularly at the medical system. Even more so if you happen to be a woman with hemophilia. As I’ve shared a number of times, women with hemophilia have struggled for years to obtain a proper diagnosis and appropriate care.
Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves. As someone with hemophilia, I felt this way. Strongly. Until last week. As I’ve mentioned…
I can already tell this journey will be long, and that sucks. I remind myself to breathe. Inhale for a count of three, hold for a count of four, exhale for a count of five. Repeat. I wring my hands, fight back tears of frustration, and try again. I name…
Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky…
I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…
Well, it was bound to happen sometime. My first ambulance ride. I was awakened suddenly from a deep sleep at 2 a.m., my upper back in excruciating pain. A 10 out of 10. I waited a few seconds, trying to take a deep breath, to see if the pain would…
“Whiskey-Bravo-six-Zulu-Yankee-Yankee looking for a radio check,” my dad called out into his faithful Kenwood handheld 2-meter radio. “W-B-6-Zed-Y-Y, I hear you loud and clear,” came an answer from radio land. This was my dad’s call sign — the constant background noise of my youth. Ask any childhood friend who spent…
Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders. According to the group’s founder, Taylor Kane, whom I interviewed back in April, the campaign was created to combat…
