I had a lot to learn about hemophilia when I attended my first retreat for women with bleeding disorders in 2017. Some of the attendees were comparing their levels of clotting factor VIII (FVIII), the protein that’s deficient in hemophilia A, when I was shocked to learn mine were the lowest…
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 love a good routine because they’re predictable and comforting. As someone who is anything but a morning person, I find my morning routine to be the most essential. I’m not particularly fond of breakfast, so as part of my routine, I make myself a smoothie that I usually finish…
Hemophilia is sometimes a surprise in families. Research shows that approximately 30% of cases of hemophilia A and B are sporadic, meaning there’s no known family history. “This happens when a new alteration in the F8 or F9 gene occurs by chance in an egg cell or…
Have you ever felt as though God or the universe was reaching out to offer you comfort? Whether you pray to Jesus, Allah, Adonai, or honor the gifts of Mother Earth, being in tune with your spiritual self can be a profound source of solace during the challenges of living…
“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…
Out-of-pocket maximum: This term is used by health insurance companies to inform customers of the maximum amount they may have to pay in a year for covered medical care, excluding premiums. Once this maximum is reached, the insurance plan covers 100% of eligible medical expenses for the rest of the…
The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…
Planning for what happens after I die is such an uncomfortable topic that I want to run and hide. Somehow, just thinking about death makes it feel more real, even though I should have years of life left. Yet, I know that hemophilia A makes my life more fragile.
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…
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…
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