“It’s been too long.” “Oh my goodness, your kids have grown!” “It’s been forever since we’ve seen each other.” These sentiments resonated as members of Sangre de Oro, the Bleeding Disorder Foundation of New Mexico, gathered for Family Education Weekend March 21-23 in Albuquerque. While many chapters around the…

Tracking factor VIII (FVIII) infusions can be a drag! When I started infusing it regularly to prevent bleeds caused by my hemophilia, I searched for an app to help. For hemophilia patients, it’s important for our medical providers to have a record of our bleeds and the treatment…

I made it to the Manila Pen Show here in the Philippines, and I couldn’t be happier! There’s something deeply satisfying about being in a space filled with fellow enthusiasts, surrounded by exquisite writing instruments and vibrant bottles of ink. For me, collecting fountain pens is more than just a…

There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when…

What do developmental disabilities, French bread, endometriosis, nutrition, English tourism, and bleeding disorders have in common? They all claim March — or a select day or week during the month — for awareness. Organizations dedicate this time to educating the public through local and national gatherings and social media campaigns.

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…

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…