Note: This column describes the author’s experiences with BeneFix (coagulation factor IX). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I expected factor to help a bleed. I didn’t expect it to change what my back could do. For months,…
Hemophilia and Me – a Column by Jennifer Lynne
Most mornings, before the day can get its hands on me, I do exercises for my spine. They are not impressive. No one would film them. They are slow, deliberate movements on a mat, the kind of thing that looks like nothing and costs more than it looks. Bracing. Holding.
For most of my life, “tired” was the only word I had, and it was never enough. I’d say it to doctors the way you’d mention the weather — a fact so ordinary it wasn’t worth writing down. And mostly, it wasn’t. Tired was normal. Heavy periods were normal. Being…
When I was in high school, I wasn’t just excused from gym class; I was prohibited from participating in every sport except swimming. While my classmates learned volleyball, basketball, and track, I sat on the sidelines because my bleeding disorders made physical activity too risky. At the time, I accepted…
I’ve been standing in front of my closet longer than I’d like to admit. It’s not vanity. It’s because I know what I want the clothes to do: I want to walk into a marble hallway and have the person across from me see someone steady, prepared, worth listening to…
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…
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…
