Flying through the air, even with hemophilia
The song “The Daring Young Man on the Flying Trapeze,” lyrics by George Leybourne and music by Gaston Lyle, plays loudly in my mind. As a child, I loved the lines “He’d…
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.
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Dating with chronic illness: When should we tell potential partners?
Creating an online dating profile can be an ominous task. At least it is for me. I’m always worried about how to present myself and what I should say. How do I ensure that…
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Collecting medical assistive devices is part of living with hemophilia
The first thing you’ll see when you walk into my storage shed is an all-terrain knee scooter. To the left, there’s a wheelchair, and to the right, a walker. Moving to my bedroom closet,…
Hemophilia bleeding isn’t always the root cause of our joint pain
In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to…
I’m not a hero for living with hemophilia
I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or…
California doctor’s license law creates unfair burden
I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon.
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…
Exploring the connection between hemophilia A and low bone density
Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going…
When confronting life’s problems, hemophilia included, I never give up
Two and a half years ago, I purchased a manufactured home in need of a few repairs. Truthfully, it had really good bones, but was a dump. But I saw the potential in it…
Let’s talk about potential bleeding risk after hysterectomy
I suddenly felt wet when I shouldn’t have. I ran to the bathroom and began pouring blood into the toilet, turning the water there a bright red. I gave myself an IV infusion of…
Why I ditched fashion for sensible shoes
I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference? Answer: Beautiful business casual clothing and sensible shoes! I’ve had a love-hate relationship with…
Weighing risk vs. benefit of different medical procedures
“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I…
