When hospitals aren’t prepared for bleeding disorders

The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now — Jared has sworn off pool slides indefinitely! Still, it reminds us how fragile things can be when hospitals aren’t prepared to handle hemophilia.

The report said: “Lacerated upper lip due to a fall.” Nothing more. No mention of his severe hemophilia B. No warning about bleeding risks.

But I remember that night clearly. Jared’s lip wouldn’t stop bleeding. Blood filled the bucket they gave us — the only “treatment” the hospital could offer. I told the ER staff he had hemophilia. They looked at me blankly. None of them seemed to know what that meant.

Even the oral surgeon asked, “What do you take to make the bleeding stop?”

The answer would have been simple: a dose of factor IX. But in that small provincial hospital, no one had clotting factor. No one had a plan. Just gauze, some stitches, and eventually, a discharge. Jared didn’t receive a transfusion. The bleeding stopped only after we got home and he infused himself.

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How rare is too rare?

This wasn’t a one-time problem. In the Philippines, where we live, many doctors still don’t understand hemophilia. It’s not just rare — it’s underdiagnosed. Many people find out about their condition later in life, sometimes after a medical emergency.

It’s even worse for women. Some doctors still believe girls can’t have hemophilia. They rely on outdated models of inheritance. But we now know that girls can and do have it. Yet many go undiagnosed or dismissed.

These gaps lead to dangerous delays. In other countries, people with hemophilia often get top priority in emergency rooms, as they should. A bleed can be life-threatening, especially without fast intervention. But here, we’re often on our own. We have to explain. Convince. Hope we’re taken seriously.

Now, Jared and I keep a whole tome of his full medical history. We don’t expect hospitals to be ready for us. We bring our own factor. We advocate hard. But it shouldn’t be this difficult.

What we can change — and what we can’t (yet)

I don’t blame the hospital staff. They weren’t trained for this. Most had never seen a hemophilia case beyond a textbook. But that’s the issue: If your illness only exists in theory, the system won’t know how to care for you.

We can’t fix everything overnight, but we can tell these stories. We can raise awareness and push for better training. We can make hemophilia visible — so the next patient won’t have to bleed alone while the staff figures it out.

Jared’s lip eventually healed, but the memory of that night still lingers. So does the discharge paper — a document that left out the most important part of the story.

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 seek the advice of your physician or another qualified health 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.