What would you rather do: have a day to relax all to yourself, or eat whatever you want and not gain weight? Many of us have seen memes asking similar questions. To be honest, until this summer, I would occasionally answer them without much thought. But after facing struggles with…
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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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 surprised myself when I was in Montreal for a hemophilia conference in 2022. I decided to stay an extra day after the event to explore the city. I have to say, I found the most amazing gluten-free French pastry shop! The croissants and pain au chocolat were to…
I really hate asking for help. I have several theories why, but mostly, it boils down to a fear of inconveniencing others. Perhaps there are deeper causes, like needing to learn that I am worthy of accepting it and understanding that everyone deserves to have their needs met, both physically…
It’s finally happened: validation. The battle to get here was rough, but perseverance paid off. Seeing “Shellye, a patient with superior mesenteric artery syndrome (SMAS), presents for follow-up visit prior to surgical repair” written in my medical records made me want to cry. I felt the same way when…
It was the first rain of the season in 1978, and I was in kindergarten. Growing up in a low-income household meant that we were not always prepared, even when my parents wanted to be. I felt fortunate that my mom had a solution to keep my feet dry! She…
I had previously heard about the term health anxiety obsessive-compulsive disorder (also known as hypochondriasis or illness anxiety disorder), so one day I decided to research its symptoms. Frequent visits to doctors and the emergency room, seeking reassurance that you are not ill from physicians, friends, and family, and…
Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…
Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…
It can be so easy to be mad, particularly at the medical system. Even more so if you happen to be a woman with hemophilia. As I’ve shared a number of times, women with hemophilia have struggled for years to obtain a proper diagnosis and appropriate care.
Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves. As someone with hemophilia, I felt this way. Strongly. Until last week. As I’ve mentioned…
I can already tell this journey will be long, and that sucks. I remind myself to breathe. Inhale for a count of three, hold for a count of four, exhale for a count of five. Repeat. I wring my hands, fight back tears of frustration, and try again. I name…
Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky…
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