When people think about hemophilia, it’s likely they usually think about clotting factor, infusions, bleeds, emergency rooms, and hospital visits. And yes, those things matter — a lot. But after years of living alongside my husband’s severe hemophilia B, I’ve realized our real “hemophilia toolkit” extends far…
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Nobody warned me that aging with a bleeding disorder would feel like negotiating with a body that keeps changing the terms. I have von Willebrand disease, hemophilia B, and Ehlers-Danlos syndrome (EDS). All are clinically “mild” for me, but together they form a triple diagnosis that…
I can juggle many things in my life, but I do have my limits. I have a mental image of me playing the clown, entertaining children while the spotlight is on me. As I start with one ball in the air, I feel sure and stable. Someone throws a second,…
I love margherita pizza. Fresh tomato, mozzarella, and basil on a thin, crispy crust, especially when it’s made with cauliflower, taste amazing. My favorite restaurant adds banana peppers, which make it even better. Last Friday, I suggested pizza for dinner, and the hardest part was deciding whether my…
Editor’s note: This story includes discussion of sexual abuse. If you or someone you know needs help, the RAINN national sexual assault hotline in the U.S. is available 24/7 by calling 1-800-656-4673 or texting HOPE to 64673. There is also an online chat at rainn.org/help-and-healing/hotline. Internationally, the University of…
Lately, I’ve been noticing something about the way money affects my mental state. When our family budget starts running low, I feel it almost immediately. Not just as stress, but as a kind of heaviness that settles over everything. My motivation drops. I move slower. Sometimes, I even find…
For much of my life in the bleeding disorders community, I’ve seen remarkable innovation happen around me. Hemophilia treatment has changed dramatically. Products have become longer acting. Prophylaxis has become more common. Gene therapy entered the conversation. Nonfactor therapies opened doors many people never imagined existed. The…
In observance of Mother’s Day, I can’t help but think about three amazing women who have proven their strength and dedication to my sons, Julian and Caeleb, who both live with hemophilia A. All three of them approached hemophilia in very different ways when they were confronted…
Certain moments stay with me forever. I remember walking down the church aisle with my dad toward my future spouse, the scent of my babies when I first held them, and the bishop’s hands on my head as I knelt among my fellow clergy during my ordination as a…
Editor’s note: This story includes discussion of sexual abuse. If you or someone you know needs help, the RAINN national sexual assault hotline in the U.S. is available 24/7 by calling 1-800-656-4673 or texting HOPE to 64673. There is also an online chat at rainn.org/help-and-healing/hotline. Internationally, the University of…
