It’s no secret that I love musicals. My greatest joy is finding phrases from a show’s libretto that speak to my soul. One such event happened when I saw the musical “Wicked” on Broadway. Toward the end of the show, witches Glinda and Elphaba sing a moving ballad in…

A greater range of motion before surgery is associated with better post-surgical outcomes for people with hemophilia who undergo knee replacement surgery. That’s according to a recent study that also found that having the surgery on both knees at the same time had a negative impact on the overall…

“OK, son. It’s time to get out of bed and face the day.” “But Dad, my leg hurts really bad. I don’t think I can go to school today.” Many days when my youngest son, Caeleb, was in high school, he and I began our day with my boy admitting…

“It looks like a murder scene every time.” “I place multiple towels under me and make sure they’re a dark color.” “I gave up on towels and turned to doggie pee pads, which protect my bed better!” I’ve heard countless women share such quotes and more when we gather at…

March is Bleeding Disorders Awareness Month (BDAM), and patients, caregivers, advocates, and supporters are working together to call attention to and provide resources for coping with the bleeding disorders estimated to affect more than 3 million people in the U.S. Bleeding disorders such as hemophilia, von Willebrand disease, and…

There’s a saying that’s been on my mind a lot lately: “Action is the antidote to anxiety.” It resonates deeply, especially in our household, where uncertainty is part of daily life. My husband, Jared, has severe hemophilia B and epilepsy — two conditions that bring unique challenges. Together, they…

Last night, I had very little left in the tank. The past few weeks have brought unique challenges and responsibilities that left me weary. As I started thinking about my column for this week, I realized how much time I’ve spent writing about when my children were small. But what…

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 others will see me for who I really am — someone who’s active, fun, loving, relatively…

When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the positive thinking movement even argue that people with hemophilia shouldn’t see it as a disability, pushing…

Women like me often wonder how the hemophilia community has overlooked us for so long. The stories of women labeled as mere “carriers” — despite experiencing life-threatening bleeding episodes — are endless. For decades, we’ve lived with symptoms that disrupt our lives, yet we were dismissed, misdiagnosed, or told…