Our toolkit for living with hemophilia is bigger than a medical bag

When people think about hemophilia, it’s likely they usually think about clotting factor, infusions, bleeds, emergency rooms, and hospital visits. And yes, those things matter — a lot.

But after years of living alongside my husband’s severe hemophilia B, I’ve realized our real “hemophilia toolkit” extends far beyond medical supplies. It’s made up of practical things, emotional coping mechanisms, routines, comforts, and tiny adaptations that help make everyday life feel more manageable.

Over time, our toolkit became less about “fixing” hemophilia and more about building a life around it without letting it dominate every corner of our home.

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Some of the most-used items aren’t medical

Of course, every person living with hemophilia should work with their care team on the medical side of preparedness. That may include clotting factor, infusion supplies, emergency contacts, treatment plans, medical IDs, and knowing when a bleed requires urgent care.

But honestly? Some of the most-used items in our household aren’t the medical ones.

They’re the ice packs permanently living in our freezer because RICE — rest, ice, compression, and elevation — becomes second nature after a while.

It’s the cooling packs we instinctively reach for after a long day, a painful joint flare, or a suspected bleed. Heating packs matter, too, especially for stiffness and chronic pain, but in our household, cold packs probably get the most mileage.

Then there are the extra pillows that help support aching joints during rest. The cane and crutches tucked nearby — these are not things my husband uses often, but they genuinely help when his mobility is affected. The orthopedic mattress we finally bit the bullet on and bought to improve our sleep quality as a couple. Even the PlayStation in our living room has become part of the toolkit, helping distract him during severe bleeds and difficult pain days.

Because when someone lives with severe hemophilia, even small comforts can make life feel more manageable.

Humor and independence belong in the toolkit, too

One thing people may not expect is how important humor can become when living with hemophilia.

My husband has a very dry, sarcastic sense of humor about his hemophilia. If you’ve read my columns before, you already know he’ll jokingly refer to himself as “such a good hemophiliac” whenever he does something people assume someone with severe hemophilia shouldn’t do.

To outsiders, that might sound strange. But inside our home, humor creates breathing room. Not every conversation ought to feel heavy. Not every difficult moment should become inspirational. Sometimes people living with chronic illness just want space to be annoyed, stubborn, sarcastic, or funny like everyone else.

I think that’s part of the toolkit, too: preserving personhood. Hemophilia affects my husband’s life, but it isn’t the only thing about him. He still has goals, opinions, hobbies, and an identity outside of his diagnosis.

That matters more than people realize.

The emotional toolkit matters just as much

There’s another part of this toolkit that took me longer to understand: emotional regulation.

When you love someone with a bleeding disorder, it’s easy to slip into hypervigilance. You start scanning for danger constantly. You over-analyze symptoms. You tense up every time they bump into furniture too hard. Sometimes your nervous system reacts before your rational brain even catches up.

I’ve had to learn that panic is not preparedness. Living in a constant state of fear doesn’t actually protect the person you love. If anything, it can quietly consume both of you.

That’s why our toolkit also includes things that support confidence, independence, and mental health — not just crisis management.

Surprisingly, workout equipment became part of the toolkit, too. Strength training and movement can help support joint stability, mobility, and overall health for some people living with hemophilia. But emotionally, it matters because movement can help someone reconnect with their body rather than only experience it as fragile or unpredictable.

Watching my husband work out reminds me that severe hemophilia is part of his life, but it isn’t the entirety of it.

Every hemophilia toolkit will look different

What works for our family may not work for someone else. A child with hemophilia will have different needs than an adult. Someone newly diagnosed may need different forms of support than someone who has lived with this condition for decades.

But I think most people in the bleeding disorders community eventually build their own version of this toolkit — often without even realizing it.

You collect the objects, routines, coping mechanisms, and adjustments that make life feel more livable. Eventually, those things stop feeling like “special accommodations” and start feeling like home.

That’s probably the most important thing our toolkit has taught me: Life with hemophilia isn’t only built around crisis. It’s also built around comfort, adaptation, humor, trust, and the quiet systems that help people keep moving forward.

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.