Squaring generational beliefs with medical realities

Living in the Philippines has shown me how differently people understand illness depending on where and when they grew up. In many rural provinces, even something as common as high blood pressure gets mismanaged. Doctors may not have specialized training. Medical equipment is scarce. And reliable health education often depends on who happens to be available that day.

In the past, in places where the system couldn’t be trusted, families learned to trust themselves instead. Remedies were passed down like family heirlooms. Healing was a community effort. People survived on instinct, faith, and experience long before they had access to specialists or diagnostics.

That history shapes how some people respond when they meet someone like my husband, Jared, who has hemophilia and epilepsy. Hemophilia is new to them — unfamiliar, invisible, and wrapped in terminology that sounds technical and far away. Epilepsy, on the other hand, is something many grew up seeing in their relatives or neighbors. They know what a seizure looks like. They know what panic feels like. They have stories about recovery, relief, and resilience.

So it’s not surprising that when they talk to me about Jared, they often bring up his epilepsy first. To them, that’s the condition they recognize. It’s the one their world prepared them for.

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The challenge is that Jared’s epilepsy isn’t a stand-alone condition. It’s the aftermath of a childhood head bleed — a direct complication of hemophilia. The bleed healed outwardly, but the neurological effects remain. This isn’t the kind of epilepsy someone simply “outgrows,” nor is it the type that can be confidently treated with traditional methods or home remedies alone.

I don’t dismiss where people’s beliefs come from. When healthcare was inaccessible, families relied on what they had: herbal approaches, spiritual practices, community healers, and lifestyle adjustments. Those things mattered. They kept people hopeful and sometimes alive. I understand the instinct to reach for what once worked.

But I also live in a world where the medical explanation is clear, well-documented, and crucial. Bleeding-induced epilepsy isn’t an opinion or an energy imbalance; it’s a physical injury to the brain and needs evidence-based care, in the same way that hemophilia requires factor replacement and monitoring, not wishful thinking.

That doesn’t make traditional beliefs wrong; it simply means they’re not enough by themselves for conditions like these.

Understanding without accepting misinformation

The longer I walk through life as a “HemoWife,” the more I see how much of healthcare is shaped by culture. People cling to what they know. They speak in the language of their childhood, their province, their memories. And many of them speak from love — even if the advice they offer doesn’t match the medical reality we’re dealing with.

I remind myself of this whenever the conversations get frustrating. They’re not trying to minimize hemophilia. They’re not trying to dismiss seizures. They’re responding through the lens that shaped them, in a country where medical access is still uneven and the gaps between knowledge and need are wide.

For us, though, clarity matters. Hemophilia has real complications. Bleeds have real consequences. And epilepsy rooted in a childhood bleed requires real treatment — the kind that protects Jared’s safety today and preserves his independence for years to come.

Understanding where people come from helps me soften my responses. But it also strengthens my resolve. Love can hold multiple truths, and one of them is this: We can honor the beliefs of older generations while still choosing the care that keeps the people we love safe.

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.