Women are still navigating treatments that weren’t designed with us in mind

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 is no small commitment. Depending on traffic, the drive can stretch anywhere from an hour and a half to three hours one way. Some days, the math just doesn’t work in my favor.

But something changed recently. My nephew moved to the St. Petersburg area, and suddenly that long drive had a second reason behind it. The chance to see him made the trip feel less like a sacrifice and more like an opportunity. So this time I went, and I’m glad I did.

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The event was held at a beautiful restaurant, and from the moment I walked in, I remembered exactly why these gatherings matter. I was surrounded by friends from both my hemophilia and von Willebrand disease worlds. These are people who understand, without explanation, what it means to live in a body that doesn’t clot the way it should. There’s a particular kind of ease that comes with being in a room full of people who get it. You don’t have to translate yourself.

The luncheon featured a speaker I have a great deal of respect for — my own hematologist — presenting on new treatments for bleeding disorders and how they apply specifically to women. It was an excellent topic that doesn’t get nearly enough attention.

Here’s the thing: Women are historically underrepresented in drug trials for bleeding disorders. When new therapies are developed, trials typically begin with more severe cases first. And in the bleeding disorders world, that almost always means men. Women — many of whom struggle for years just to get a proper diagnosis — are frequently an afterthought in the very research meant to help them.

This matters more than it might seem at first glance.

One of the most serious risks with any bleeding disorder treatment is what I think of as swinging the pendulum too far in the other direction. We spend our lives managing blood that doesn’t clot well enough. But push too hard in the opposite direction, and you risk a clotting event — something like a pulmonary embolism — which is every bit as dangerous, and in some ways more complicated to treat. The standard response to a clotting event is blood thinners. For someone whose blood already struggles to clot, that’s a precarious place to be.

It’s a delicate balance, and one I know all too well. In 2019, my own treatment swung that pendulum too far, and I developed multiple pulmonary embolisms after a major surgery. I lived the very scenario my hematologist was describing. I had a very difficult year, full of complications. It is not a theoretical risk. For me, it was a very real one.

Because women’s bodies respond differently — hormonally, physiologically — the data gathered from male-dominated trials doesn’t always translate cleanly. We are, in many ways, still navigating treatments that were never fully designed with us in mind.

That’s the conversation my hematologist brought into the room that afternoon. And having it in a space filled with women who live this reality every day made it land differently than it would in a medical journal or a conference hall. These weren’t abstractions. They were our lives.

I drove home that evening thinking about all of it — the friends, the food, the frank medical talk. The long drive didn’t feel so long anymore. Some things are worth the traffic.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.