It’s time we discussed what I call the ‘hemophilia and …’ effect
When people hear the word “hemophilia,” they usually picture bleeds, factor infusions and other treatment routines, and trips to the hospital. Those things certainly shape the condition, but they’re not the whole story.
Over the years, I’ve noticed something that feels harder to explain, yet so many families quietly live with it. I’ve come to think of it as the “hemophilia and …” effect. This reflects the reality that many people with hemophilia also live with something else layered on top of it. Something that doesn’t fit neatly into treatment pamphlets or the stories we tell publicly. It’s the hidden part of the diagnosis that often goes unspoken until someone finally gives it a name.
My husband, Jared, lives with severe hemophilia B and epilepsy. When he was a child, he experienced a head bleed that physically healed but left behind lasting seizures. His epilepsy is a direct consequence of that bleed, something that defines his life even more than hemophilia does, due to the sheer gravity of the limitations it poses.
Yet most of his life, Jared didn’t talk much about epilepsy. It wasn’t that he was hiding the seizures — people saw them whenever they happened. He simply went through the motions: Manage a seizure, recover, move on. It became routine, in the way some “ands” quietly fold themselves into daily life without ever being explored.
But lately, something has been shifting. At a recent disability expo, he approached a well-known artist with epilepsy who had just finished giving a talk. It was the first time I’d ever seen him take a step toward that part of his identity. For him, this was a turning point. A dipping of toes into a community he had never really allowed himself to engage with.
The ‘ands’ we don’t talk about enough
As I grew closer to the hemophilia community, I met many people living with their own versions of “hemophilia and …”:
- Hemophilia and chronic pain
- Hemophilia and depression, anxiety, or other mental health challenges
- Hemophilia and connective tissue disorders
- Hemophilia and mobility struggles
- Hemophilia and access issues, where treatment depends on distance, cost, or sheer luck
For a long time, I assumed Jared was the only one who knew the experience of having epilepsy. At organization events, I never saw anyone else occasionally lose consciousness. It created this quiet sense of isolation — as if his “and” was uniquely heavy, uniquely rare.
But that perception changed during a conversation with one of his fellow members. This person shared that he, too, had experienced seizures after a head bleed — in his case, occipital lobe seizures that affected his vision. Jared’s seizures originate in the right temporal lobe, so their patterns differ, but the shared thread was unmistakable. Hearing this felt like watching a door open between two people who thought they were walking separate paths.
That moment reminded me that many “ands” exist in silence — not because they’re uncommon, but because they’ve never been given room to be spoken about aloud.
Why naming the ‘and’ matters
When Jared approached that artist at the expo, I saw something shift. He was finally acknowledging a part of his life he’d spent decades quietly navigating. Here’s what we’ve realized: Naming your “and” doesn’t invite pity, nor does it diminish resilience. It creates space for support, clarity, and sometimes connection.
For caregivers and partners, hearing about someone’s “and” allows us to show up more compassionately and with fewer assumptions. For people with hemophilia, acknowledging the “and” can lessen the weight — even if only slightly — just by making it shareable.
Most importantly, naming the “and” honors the full experience of living with hemophilia. Because hemophilia isn’t just about bleeds and factor levels, it’s also about the unseen stories, the overlapping challenges, and the lives shaped by more than one diagnosis.
If you also live with your version of “and,” know this: You aren’t too much. Your experience matters. You deserve to be seen, acknowledged, and supported in every way that you need to be.
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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