Hematomas happen: Let’s talk about everyday bleeding with hemophilia

I was at the Coalition for Hemophilia B’s Annual Symposium this month in Orlando, Florida — surrounded by my community, sharing meals and meaningful conversations — when it happened.

No bump. No injury. No accident. I was literally just standing in the elevator when I felt it: a sudden, sharp pop in my finger. Then a large, purple lump began to form. Swelling, tingling, and pain followed — and possibly a few pointed curse words.

I took some photos and uploaded them to the invaluable Microhealth app, which is shared with my medical team. I documented the bleed and let them know I was thinking I’d need to infuse.

I asked the infusion nurse on-site if she had any ice and to take a look. She didn’t hesitate: “You need to treat that.” I explained that I only infuse myself when absolutely necessary. She kindly offered to help.

So I infused. But I waited two days — maybe too long. I’ll never know for sure.

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The hematoma in my finger may seem minor in the grand scheme of things, but it definitely made itself known. I was part of the setup team at the symposium, and I had a hard time helping. Every task felt harder — gripping, lifting, even just pointing. I worried it might spread or worsen. I kept glancing at it, wondering if I was doing enough, or if I’d waited too long to treat.

I ended up ordering disposable ice packs and a finger sleeve from CVS and had them delivered to the hotel. I walked around holding an ice pack in my hand — something that, at any other conference, might have drawn attention or seemed out of place. But here? In a room full of people who get it, I didn’t need to explain.

Not a textbook bleed

My factor levels are such that I shouldn’t have spontaneous bleeds. But I do. And I’m not alone. It’s a reality for many of us with bleeding disorders, especially those of us with mild hemophilia or von Willebrand disease.

Our bleeds don’t always fit the textbook definition. They can be spontaneous, subtle, and still deeply disruptive. But if they’re not visible, dramatic, or captured in a lab value, they often get dismissed — by others and even by ourselves.

I’ve heard so many stories over the years that echo this truth. A woman told me she missed an entire week of work because of a stubborn ankle bleed that made walking unbearable. Another said she ignored her elbow pain for days, assuming it was “nothing,” only to realize later that internal joint bleeding had caused lasting damage.

These stories matter

If we keep waiting for our bleeds to look “severe enough” before we take them seriously, we risk more pain, more damage, and more emotional exhaustion. We also risk reinforcing the very myths that lead to underdiagnosis and undertreatment — especially in women.

That’s why it’s important to talk about the small stuff. The bruises. The mouth bleeds. The spontaneous hematomas. Every story helps paint a fuller, more accurate picture of what bleeding disorders really look like in daily life.

So here’s my reminder to you, and to myself: Document your symptoms, even if they feel “minor.” Speak up. Ask questions. Trust your instincts. And never feel like you have to apologize for treating your bleed, no matter how small it seems.

My finger is still a little tender, and there’s a small lump left over from the hematoma. But it’s healing. And it’s a reminder I’ll carry with me: Every bleed counts.

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.