In recent years, there has been a massive shift in the understanding that female hemophilia carriers can indeed have the condition themselves. Fellow Hemophilia News Today columnist Jennifer Lynne and I both write regularly about the struggles women with hemophilia face, though more are now being properly diagnosed…
The Forgotten Factor - a Column by G Shellye Horowitz
I don’t get headaches often, but when I do, I absolutely hate them. They can be particularly worrisome for a person with hemophilia. Because I am not prone to headaches, it is a bit disconcerting when I get one. Having hemophilia A means I am often worried about…
When I was in the fifth grade, I’d look in the mirror every morning and hate who I saw. I believed I was ugly, unpopular, and weird, and the hand-me-down clothes I wore made me look different. I’d say horrible things to myself, like, “You really are a dog.” I…
I once arrived late to an event and offered no explanation. I’d been standing at my door, ready to go, when I realized I needed to infuse factor VIII before I could proceed safely. Because I have hemophilia, I infuse factor every 48 hours to prevent bleeding. I use…
Editor’s note: This story includes discussion of sexual abuse. If you or someone you know needs help, the RAINN national sexual assault hotline in the U.S. is available 24/7 by calling 1-800-656-4673 or texting HOPE to 64673. There is also an online chat at rainn.org/help-and-healing/hotline. Internationally, the University of…
Editor’s note: This story includes discussion of sexual abuse. If you or someone you know needs help, the RAINN national sexual assault hotline in the U.S. is available 24/7 by calling 1-800-656-4673 or texting HOPE to 64673. There is also an online chat at rainn.org/help-and-healing/hotline. Internationally, the University of…
I recently wrote a paper that compared how different religious traditions address bleeding disorders, starting with where they are mentioned in sacred texts. The study of theology is one of my many interests. As someone who identifies as a polysectarian (I’m connected to two religions, both of which often demand…
I struggle when I lie down to sleep, and my legs hurt so much that I need to move them. I don’t get a good night’s sleep, and when I awake in the morning, my brain is foggy and I feel like I’m moving around in a bubble. I am…
I have been applying to graduate programs that would incorporate more spirituality into my advocacy work with the hemophilia community and allow me to explore how faith and spirituality help people cope with bleeding disorders. Among them was a dream doctoral program for working professionals that offered students scholarships…
“Today I am thankful for warm showers and a safe place to live. Dog kisses, even when I am grumpy, make me thankful. I am thankful I did not come unglued when I was frustrated at work.” In November 2020, as part of a women’s hemophilia retreat sponsored by…
