The Forgotten Factor - a Column by G Shellye Horowitz

Sixteen years from symptoms to diagnosis. This statistic is quoted incessantly among women with bleeding disorders, describing the treacherous diagnostic journey we often endure. But what many don’t realize is that this figure came from one study of 75 women diagnosed with von Willebrand disease (VWD) who were registered…

Tracking factor VIII (FVIII) infusions can be a drag! When I started infusing it regularly to prevent bleeds caused by my hemophilia, I searched for an app to help. For hemophilia patients, it’s important for our medical providers to have a record of our bleeds and the treatment…

“As a woman with hemophilia, what situations cause you anxiety?” a friend recently asked me. What a great question! I loved that she added “as a woman” because women with hemophilia can experience stressors that men with hemophilia don’t. Many anxiety-provoking circumstances affect men and women with hemophilia…

It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We…

“It looks like a murder scene every time.” “I place multiple towels under me and make sure they’re a dark color.” “I gave up on towels and turned to doggie pee pads, which protect my bed better!” I’ve heard countless women share such quotes and more when we gather at…

The song “The Daring Young Man on the Flying Trapeze,” lyrics by George Leybourne and music by Gaston Lyle, plays loudly in my mind. As a child, I loved the lines “He’d fly through the air with the greatest of ease/ That daring young man on the flying…

Creating an online dating profile can be an ominous task. At least it is for me. I’m always worried about how to present myself and what I should say. How do I ensure that others will see me for who I really am — someone who’s active, fun, loving, relatively…

The first thing you’ll see when you walk into my storage shed is an all-terrain knee scooter. To the left, there’s a wheelchair, and to the right, a walker. Moving to my bedroom closet, you’ll find crutches, multiple canes, a walking boot, ankle and knee braces galore, Ace bandages, self-adhesive…

In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to eat my favorite food: Ethiopian! Suddenly, I felt a sharp, shooting pain in my hip. It…

I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…