I Wish My Dad Could See Today’s Progress in Hemophilia Treatment
My dad’s life was incredibly difficult. He was in pain all the time and misunderstood by others. He grunted and grumbled, and walked with an exaggerated limp. People thought he was a…
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
Staff cuts at the Division of Blood Disorders threaten our community
Note: All four U.S.-based columnists for Hemophilia News Today collaborated on this column. While readers may see individual columns on these issues in the days to come, these writers felt it was important to…
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What It’s Like Having Hemophilia and Living in a Rural Town
I live in the middle of nowhere. It is one of the most beautiful places on the planet. The forest and the ocean intersect, creating some of the most gorgeous hiking trails I have…
Dumping the Imposter Syndrome and Embracing Hemophilia as a Woman
Sometimes I feel like I don’t belong. I’m a misfit, an imposter. I feel fine and haven’t had a bleed in almost a month. Do I really…
Hemophilia Care Entails More Than Treating Bleeds
Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first…
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…
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…
