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…
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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…
My husband, Jared, first set foot in a gym just months into our relationship. It wasn’t some grand fitness decision — just curiosity. What would it feel like to work out? That question led us to a small, hole-in-the-wall bakal gym near his university — a Filipino term…
I recently wrote a paper that compared how different religious traditions address bleeding disorders, starting with where they are mentioned in sacred texts. The study of theology is one of my many interests. As someone who identifies as a polysectarian (I’m connected to two religions, both of which often demand…
“I don’t see blood, so you must not be bleeding.” For people with bleeding disorders, that kind of thinking isn’t just frustrating; it can be dangerous. Bleeding isn’t always visible or dramatic. It doesn’t always look like blood pouring from a wound or a bruise that appears immediately. For…
One thing that moves me is watching my sons find pockets of time when their bleeding disorder doesn’t take center stage in their lives. During these periods of freedom, time seems to suspend itself for a moment, and Julian and Caeleb are able to live their best lives without worrying…
Packing my lunch is necessary because my schedule as a hospice chaplain can change quickly. I keep food and drinks in an ice chest in my car because it can get hot here in New Mexico. When I get a call to see a patient whose passing is imminent, time…
Before I ever met my husband, Jared, he had learned to adapt well to having severe hemophilia B and seizures. But one moment from his childhood still finds its way back to him. On the first day of fifth grade, his teacher told the class there would be a…
