Why I Don’t Hate My Dad for Giving Me Hemophilia
My mom asked me last week if I ever curse my dad for giving me hemophilia. It was a fair question. Recently, I had a bad joint bleed in my…
The Forgotten Factor
— G Shellye Horowitz
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.
Featured Post
Missing persons: Women and girls with hemophilia
When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is really unusual. It’s rare for women to have hemophilia!” This ubiquitous misconception is the…
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I Have Hemophilia and Tattoos, and I Don’t Regret It
A few years ago, I went to a tattoo convention. Before I could enter, I was required to sign a liability release. The form said that people with bleeding disorders (and a long list…
‘My Child Is OK, Doctor, They Have Hemophilia’
It was Christmas in 1978. My brother was thrilled that Santa had brought him exactly what he wanted — a large, bright red firetruck with a ladder that really worked! (Never mind that we…
For Too Long, I Thought My Bleeding Was Normal
Two weeks ago, my daughter helped me move a small refrigerator. I had the front end and she had the back, which was open and exposed various parts. When we arrived at our car,…
Learning to Put ‘Me’ Before ‘We’
It isn’t that I can’t be alone. I am an introvert. As such, I can self-entertain for hours. I like spending time with my own company. I find many…
Navigating the Holidays With Humor
Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating…
We Need a Standard of Care in Women’s Hemophilia Treatment
I visited a hemophilia treatment center for the first time in the 1980s, to have my factor levels tested. The phlebotomist couldn’t find a vein, and I was distraught.
Keeping Moms and Babies Safe During Pregnancy and Birth
I have seen it many times. When a woman in a family with hemophilia gets pregnant, some feel OK emotionally, but for many, it causes a moment of panic, and sometimes sheer…
Lessons in Self-care: I’m Keeping My Best Roses for Myself
This year, my flower garden has grown exponentially. A wonderful gift that “bloomed” from my COVID-19 boredom was the chance to develop my horticultural skills. I increased my rose…
30 Ways to Find Hope in Dark Spaces
Feeling hopeless? Wondering how you will possibly find the energy to go on? Wanting to smash your alarm clock, pull your covers over your head, and hide in your bed all day long? You…
Finding Hope and Community Through the Hemophilia Forums
You are not alone. Coping with hemophilia as a patient, caretaker, or medical provider can seem overwhelming at times. When I am overwhelmed, have a question, or just want to talk…
Combating 4 Common Myths About Hemophilia
When I have the opportunity to gather with my brothers and sisters from the hemophilia community, I notice we all have stories to tell. When you live with a rare disease, you are bound…
