Dear Hemophilia Parent, Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days, 2 years, or 20 years old. First and foremost, you are awesome, and I…
The Forgotten Factor - a Column by G Shellye Horowitz
An opportunity arises Five years ago, Ashley Gregory was asked to head The Female Factor (TFF), a program sponsored by the Hemophilia Foundation of Northern California (HFNC). According to Ashley, this opportunity brought her out of her shell and helped her to discover an affinity and…
A conversation Last night I dreamed that I spoke with my father. I asked him how he knew he had a bleed. Did his knee bubble like a soda? Was it tight, but not painful? I yearned for his input, but my alarm sounded before he was able…
I am not merely a carrier of hemophilia. I am certainly not an asymptomatic carrier of hemophilia. I am not even a symptomatic carrier of hemophilia. I am a woman…
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 share. The thread of commonality in their journeys is their struggle…
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 scheduled medical procedure; or prophylaxis, which…
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.
