What living independently with hemophilia really looks like
Everything points back to one concept: Being prepared
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Lately, I’ve come across more conversations about what it means to live independently with a bleeding disorder. They usually focus on big milestones: moving out, going to college, starting a career, or taking charge of one’s own healthcare.
It made me curious, especially now that my husband, Jared, and I have lived on our own with our daughter for more than five years. So I asked him, as someone with severe hemophilia B, what advice he would give someone with hemophilia hoping to live independently.
Jared answered:
- Learn to self-infuse.
- Prevent bleeds through exercise and movement.
- Track your bleed frequency.
- Log your infusions.
- Keep a well-stocked first-aid and recovery kit.
- Build up a reserve of factor, when circumstances allow.
At first, it sounded like a practical checklist. Then I realized that every answer pointed to the same idea: preparation.
Independence begins before it’s tested
What struck me most was that none of Jared’s advice focused on what to do during a bleed. Every suggestion was about what happens beforehand.
Learning to self-infuse means treatment doesn’t depend on someone else. Tracking bleeds and infusions helps a patient recognize patterns and communicate with a healthcare team. Staying active protects joints and helps reduce future bleeds. Keeping a recovery kit nearby simply makes difficult days easier.
Preparation isn’t glamorous. Most people never see it. But it’s often what makes independence possible.
One piece of advice stayed with me: Build up a factor reserve, when circumstances allow.
Here in the Philippines, where we live, access to treatment has improved tremendously, but availability isn’t always guaranteed. Sometimes factor products are out of stock. Other times, available doses are too limited. Families bridge those gaps through humanitarian aid programs, patient organizations, and careful planning.
A small reserve is no substitute for reliable access. But when availability is unpredictable, families work with what they have. Even a modest amount of factor can provide something invaluable: peace of mind.
Living with hemophilia looks very different depending on where one lives, what treatment is available, and what the healthcare system can provide. Those differences shape everyday decisions — and sometimes bigger ones:
Can we book that trip? Is this a good time to try a new sport? Which hospital should we head to if there’s an emergency? Who will look after our daughter and pets if one of us is admitted? Do we have enough factor if something unexpected happens?
The answers to these questions are rarely a simple yes or no. Instead, they usually prompt another question: How prepared are we?
Making room for ordinary life
After we’d finished talking through his list, Jared had one final piece of advice: “Marry someone who’ll make content out of your hemophilia.”
We both burst out laughing.
To anyone who doesn’t know us, that probably sounds odd. But he wasn’t really joking about hemophilia. He was joking about me.
It’s become our running joke that almost any conversation about hemophilia will eventually become a column or a short-form video. Many begin with one of Jared’s jokes. He supplies the lived experience, and I turn it into a story.
One thing I’ve always admired about him is that he takes hemophilia seriously while still making room for laughter.
He’ll gladly explain why self-infusion matters or why keeping factor on hand can make a difference. But once those practical things are taken care of, he’d much rather spend his energy being a husband, a father, and the kind of person who makes our daughter laugh.
Our daughter knows her dad has hemophilia. She has watched him self-infuse for years. She tells her friends that his epilepsy began with a brain bleed when he was young. She even helps by removing the butterfly needle after his infusions are complete, under his supervision.
To her, hemophilia isn’t frightening because it has never been treated as something mysterious. It’s simply one part of who her dad is.
She also knows him as the dad who swims with her, tells corny jokes, and somehow manages to find humor even on difficult days.
Looking back, I realized that every one of Jared’s tips served the same purpose: Learn the skills. Build the habits. Prepare beforehand.
This isn’t because hemophilia should define his life, but rather because the better prepared he is, the more freedom he has to say yes to the life he wants to live.
Maybe that’s what independence with hemophilia really looks like: not proving that you can do everything alone, but preparing well enough that hemophilia becomes just one part of a full and meaningful life.
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.
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