G Shellye Horowitz,  —

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 inactivation, called “lyonization.” As the inactivation process is random, some female…

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 that does not go away. When a woman has hemophilia, it…

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 synthesized to wholly deflate my confidence with this critical skill.  …

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 attract both people who loved it and people who hated it.

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.” Gathering 103 women representing 32 states, the event featured physicians…

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 thought once to be male-only makes it complicated to navigate. I…

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 I can step back and see the gifts that have come from…

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 long-standing bleeding issues. This revelation came 23 years after the onset of…

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 recount the story of Passover, a celebration of freedom from slavery…

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. My grandmother passed the genetic mutation to my father. My father…