The Forgotten Factor - a Column by G Shellye Horowitz

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…

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — often attributed to Albert Einstein I live with a bleeding disorder, hemophilia A. Survival often is truly about attitude, optimism, and perseverance.

Forty-six. That’s how old I was when I finally accessed the hemophilia care that I’d needed my entire life. I believe the reason it took so long was that I’m a woman. It may seem crazy to those who aren’t familiar with the bleeding disorder. For years, the misconception…

It’s never easy to talk about weight. Like many people, my weight has wildly fluctuated throughout my adult life, sometimes by as much as 60 pounds or more. I’ve struggled to find a happy medium between healthy food choices and enjoying the occasional indulgence. I haven’t been in tip-top shape…

Sometimes I forget I have hemophilia. I know that sounds silly, particularly after years of struggle to obtain a diagnosis, yet it’s true. This forgetting is great when I’m healthy and have no issues. There are times, however, when it’s imperative that I remember I have hemophilia. Sometimes I…

Years ago, I attended a bleeding disorders conference where a person with hemophilia shared about an encounter they had with a law enforcement officer during a routine traffic stop. In order to appreciate the exchange, it’s important to understand that those of us with hemophilia are missing a protein…

I am in a video game. My mission: Fight the medical bureaucracy and access care. I must complete three levels and capture the golden key, which unlocks a fortress where healthcare is obtained. I’m stuck on Level 2. No matter what I try, I can’t gather the tools to unlock…