When I worked for the Hemophilia Federation of America (HFA), I was incredibly grateful for its dedication to bringing awareness to the needs of women with hemophilia, many of whom had a mild form of the disorder. As I observed our community events, I realized that a group was…
The Forgotten Factor - a Column by G Shellye Horowitz
“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with Hemophilia in November 2018. As a woman with hemophilia, I know about the struggle for legitimacy in a male-dominated disease space. What I…
Note: All four U.S.-based columnists for Hemophilia News Today collaborated on this column. While readers may see individual columns on these issues in the days to come, these writers felt it was important to share their collective voice to highlight the impact of recent changes at the U.S. Centers for…
“Huge Estate Sale: Hoarder House!” the advertisement said, offering 4,000 square feet of floor-to-ceiling treasures. The former occupant was a retired psychology professor named Bill who reportedly let no one into his home. When he died, his relatives entered his home for the first time. Forcing the front door open,…
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…
