I’m 47 years old, and I live with transthyretin amyloid cardiomyopathy (ATTR-CM). But when I think about this disease, I don’t just think about myself. I think about my dad.
I watched my dad fight this same disease, and I watched it slowly steal him away. It wasn’t quick. It was years of testing, years of waiting, years of watching his body grow weaker while doctors couldn’t seem to find the answer. And then, when they finally did, it was too late to get that time back.
Those years marked me. I can still see him struggling to do simple things, still hear the frustration in his voice, still feel the helplessness of standing by while someone I loved slipped away.
That’s what ATTR-CM does. It doesn’t just take from the person who has it — it takes from everyone who loves them, too. The burden spreads. And now, I’m the one carrying it.
Living with this disease isn’t just about the physical symptoms. Yes, I’m exhausted all the time. Yes, my legs give out. Yes, my stomach betrays me without warning. But the heavier part is knowing the people I love are carrying the weight with me. I know my husband sees it, even when I try to hide it. I know my boys notice, even when I pretend I’m fine. And I can’t help but wonder if they see me the way I used to see my dad — fading, piece by piece. That thought alone can crush me.
But here’s the part I didn’t expect: I feel left out even among the people who should understand — the ATTR-CM community itself. You’d think that would be the one place I’d fit, the one place where I could show up exactly as I am. But instead, I’ve been pushed to the side. I don’t fit the typical picture of ATTR-CM. I’m “too young.” I’m not an older man. So my opinions get dismissed, my experiences brushed off. Sometimes I sit in meetings or read posts and feel invisible, like my story doesn’t count because it doesn’t look like everyone else’s.
And that hurts. Because if I don’t belong with the healthy people in my life, and I don’t belong with the ATTR patients either — where exactly do I belong? That kind of loneliness is hard to put into words.
But here’s what I know, because I saw it in my dad: This disease does not follow rules. It doesn’t care about the picture we’ve created of what it’s supposed to look like. And every time we cling to that mold, people get missed. People go undiagnosed. People die. My dad went three years before anyone figured it out, because he was “too young” to fit the model. That delay cost him precious time. And I refuse to let his story, or mine, be brushed off just because we don’t fit the mold.
That’s why I write. That’s why I speak. Even when it feels like no one wants to hear. Even when my words feel small. Because they matter. My story matters. My dad’s story matters. Every story matters.
I speak for myself, but also for every younger patient who feels like they don’t belong in the support groups. For every woman who gets dismissed. For every family who is grieving someone they lost too soon because the medical world wasn’t looking in the right direction.
ATTR-CM has many faces. Mine is one of them. My dad’s was another. And so are all the ones still waiting to be seen.
I may feel alone. I may feel left out. But I won’t stay quiet. Because until we break this mold, until we start seeing this disease for what it really is, too many more people will keep carrying this burden in silence. And no one should ever have to feel this invisible.
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