With factor IX deficiency, saying I have ‘hemophilia’ isn’t specific enough

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 it usually avoids a long, complicated conversation.

For a while, that approach seemed to be working. There were moments when I felt understood without needing to explain every detail — when my hemophilia was acknowledged without hesitation or confusion. And honestly, that can feel like progress.

But that sense of clarity doesn’t always hold.

In reviewing my records one day, I noticed something that stopped me. My condition had been documented as hemophilia A (factor VIII deficiency). That’s not what I have. I have hemophilia B, or factor IX deficiency.

This assumption is made too often. When most people hear “hemophilia,” they automatically think of the most common type: hemophilia A. It’s what’s talked about most. It’s what many providers are more familiar with. And it’s what systems often default to when something isn’t clearly specified.

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Not specific enough

When I was young, my hematologist didn’t write “hemophilia B” in my chart. He wrote “factor IX deficiency.” It was specific. It was accurate. And it left little room for interpretation, and avoided the “women can’t have hemophilia” conversation altogether.

Somewhere along the way, though, I started saying hemophilia B. It felt easier. More familiar. Less likely to require an explanation. But easier doesn’t always mean clearer. Hemophilia isn’t one-size-fits-all.

This confusion isn’t just theoretical, nor am I the only person to experience it. During a rap session for women affected by hemophilia B, several women said their children had been treated with factor VIII by accident. Let that sink in.

In those moments, the distinction between factor VIII and factor IX isn’t just medical terminology. It can be the difference between the right treatment and one that doesn’t work.

For women with bleeding disorders, this adds another layer of complexity. Many of us have already spent years being misunderstood, misdiagnosed, or labeled as “just carriers.” So when we do speak up and clearly state our condition, it’s frustrating to still be placed into a box that doesn’t quite fit.

So I’m returning to the language that was used when I was diagnosed — the language that got it right. I’m going back to “factor IX deficiency.” Because when I say “hemophilia,” what people often hear is “factor VIII.” And that’s not my reality.

It’s not that hemophilia is the wrong term — it isn’t. But it’s not always specific enough. When it comes to our health, clarity isn’t optional. It’s essential.

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.