There are events I know I should attend but talk myself out of. The Bleeding Disorders Foundation of Florida’s special Ladies Tea Luncheon has often been one of them. It’s not because it isn’t worthwhile — it absolutely is — but because getting to Tampa from where I live…
Hemophilia and Me – a Column by Jennifer Lynne
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…
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…
“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…
I just returned from the Hemophilia Federation of America (HFA) Symposium in New Orleans, and like many gatherings in the bleeding disorders community, it left me inspired, reflective, and deeply grateful. This was my first HFA Symposium, and I’m truly grateful to the organization for including me. There’s something…
There are moments when I’m reminded just how much I depend on something most people rarely think about. I live with von Willebrand disease, and my treatment depends on Humate-P (antihemophilic factor/von Willebrand factor complex [human]), a plasma-derived therapy. This medication is more than just a vial;…
Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens before I even leave my closet. What am I doing today? How far will I be walking? Will I be sitting…
In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combination of hemophilia B and von Willebrand disease. It’s broad enough to be understood, and…
I read this week about Bleeding.org LIVE!, a national livestream taking place at 4 p.m. Pacific time on March 28, and I felt something I don’t always feel when it comes to healthcare: seen. The three-hour livestream will be hosted by Greg Grunberg, an actor and bleeding disorders…
It started with a refrigerator leaking water out of the bottom and a YouTube video that made it seem like an easy fix. You know the kind: “Just remove the freezer door.” “Melt the ice with a hair dryer.” “You’ve got this.” It didn’t seem like a big deal, but…
