For most of my childhood and teenage years, I thought everyone planned their lives around their periods the way I did. I wore dark clothes to school, kept my backpack stocked like a field hospital, and constantly did the quiet math of how long I could sit through a class…
Hemophilia and Me – a Column by Jennifer Lynne
It happened three times in 48 hours. I didn’t go looking for them — the conversations found me. Three different people from our bleeding disorders community, none knowing about the others, told me a similar version of the same story. They had tried to talk to their mothers about bleeding…
I have medical records from my old hemophilia treatment center in Wisconsin dating back to the 1990s. Over the years, those old documents have turned out to be some of the most powerful tools in my healthcare journey. I was diagnosed in the ’90s with a rare…
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…
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…
