My husband still experiences seizures from a childhood brain bleed
The bleed happened two decades ago, but it continues to shape our lives
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When people think about hemophilia, they usually think of joint, muscle, and sometimes soft-tissue bleeds. But one of the most dangerous complications occurs elsewhere: the brain.
My husband, Jared, had a brain bleed as a child. It’s the kind of event people often imagine as something that is treated and then fades into the past. But the truth is that brain injuries can cast a very long shadow.
Years later, that childhood hemorrhage left him with mesial temporal sclerosis, or post-injury scarring on his right temporal lobe. As a result, he continues to live with seizures, although the brain bleed happened two decades ago.
When controlled isn’t really controlled
Jared’s seizures wouldn’t be considered controlled in the strictest sense. He still has a few of them a week. On paper, that frequency might fall into the category of poorly controlled epilepsy. But life is rarely as straightforward as the definitions you find in medical literature.
Over the years, neurologists have adjusted medications again and again, searching for the best balance between reducing seizures and preserving quality of life. The current combination isn’t perfect, and the seizures haven’t disappeared, but it allows him to remain mentally and emotionally himself.
That wasn’t always the case. One medication dramatically altered his personality. He became unusually aggressive and easily triggered — so much so that I sometimes felt like I was interacting with a stranger. It was frightening, especially since I was so young and naive. It wasn’t that I believed he’d changed as a person, but I did fear the medication was interfering with who he really was.
Eventually, that treatment was abandoned in favor of a mood stabilizer. Interestingly, he experiences fewer seizures on this medication. For Jared, emotional highs and lows are far more of a trigger than flashing lights or sleep deprivation.
The change also simplified his treatment. Instead of managing two medications, he now takes only one. Jared half-jokes that it’s better this way — fewer pills means fewer expenses, and therefore less stress, as we also pay out of pocket for factor therapy. Still, despite the improvement, he has yet to have a seizure-free month.
Living in the Philippines also changes how we think about what “success” in medicine looks like. When you grow up in a place where many people with hemophilia would consider having just one bleed a month fortunate, you learn that perfection isn’t always the goal. Sometimes, it’s simply finding the most livable balance available.
The ripple effects of a brain injury
A childhood brain injury doesn’t stay neatly contained in childhood. It may ripple outward into adulthood, relationships, and family life.
I don’t usually describe myself as a caregiver. Jared and I are partners, and he has always been determined to live life on his own terms. But when someone you love lives with both hemophilia and seizures, a certain level of vigilance becomes part of everyday life.
You pay attention to fatigue, stress, or small changes that might increase the risk of a seizure. You become mindful of medication schedules and doses. Plans sometimes need to be adjusted. There’s always a quiet awareness that something unpredictable could happen.
And sometimes, as difficult as it is to admit, you also accept that accidents are part of his reality — like the burn injury he experienced in December that he’s still recovering from through occupational therapy. Real life with chronic illness doesn’t allow for constant supervision, no matter how much people might imagine otherwise.
And yet, life continues to move forward. We work, raise our daughter, and find ways to build a life that feels full and meaningful, even with these complications in the background.
The brain bleed that changed Jared’s life happened long before I knew him. But its effects are still part of the story we’re living today — a reminder that some complications of hemophilia don’t end when the immediate crisis passes.
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.
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