G Shellye Horowitz, MA, PPS, has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. She also has hemophilia A. Her advocacy work includes an emphasis on early diagnosis and care for females with hemophilia and strengthening diagnosis and care for all people with mild bleeding disorders.
Shellye is a licensed school counselor and principal with over 30 years experience. She currently works for the University of Washington as a researcher in the Johnsen Lab. She lives in Northern California, where she and her dog, “Hope,” love to wander through the majestic Redwood forests. All opinions are her own.
As a woman with hemophilia, one of the greatest challenges I face is being believed. This challenge is multifaceted. First, I struggle to convince people that women can and do have hemophilia. Next, I have to explain…
Read more
Over the past few years, I have had the pleasure of connecting with many women who are diagnosed with hemophilia A, hemophilia B, or as symptomatic carriers. These women have so many stories to…
When someone has a hemophilia diagnosis, they receive treatment in one of two ways: on demand, in which they are given products to help their blood clot after an injury or before a…
In the past, no one believed women could have hemophilia. The medical community assumed that one X chromosome would compensate for the other. Doctors now know about the process of duplicate X chromosome…
Hemophilia takes a toll not just on the life of the individual who struggles with the disease, but also on the family unit. It is not easy to have a genetic disorder as a life focal point…
I have a confession: I hate to self-infuse. I am really bad at it. Well, at least most of the time I am. The multitude of blown and missed veins over the past few years have…
Raising awareness is a delicate task. Sometimes, the most effective way to promote dialogue is with a tool that is considered controversial. I understood this seven months ago when I made a T-shirt that was bound to…
Inspired to sponsor a national conference for women with hemophilia types A and B, The Hemophilia Foundation of Michigan (HFM) became a game changer last November when it hosted an event called “Being Visible.”…
I am a patient. I am an expert on my own health experiences. I am an educator. I am an advocate. Hemophilia is a rare disease. Being a woman with a disorder…
I don’t think anyone likes having a chronic disease. I have good days, and I have bad days. Thankfully, the good days outnumber the bad ones. There are days when I tolerate having hemophilia, days when…
Brandi’s journey with hemophilia Recently, I had the opportunity to speak with Brandi Worthington about her experiences as a woman living with hemophilia. Brandi was in her 30s when she received a diagnosis that linked hemophilia to her…
This month, we celebrated the two holidays of Easter and Passover. Many of my Christian friends describe Easter as a celebration of freedom over sin and death due to the resurrection of Jesus Christ. My Jewish friends gather to…
A genetic mutation for hemophilia has passed through five generations of my family. We can trace it from my great-grandfather, known simply as a “bleeder,” to my nephew. My great-grandfather passed the genetic mutation to my grandmother.
Get regular updates to your inbox.
