A year ago, my family experienced an unimaginable loss—my brother passed away suddenly at age 62. There were no warning signs. No chronic illness. Just sudden, non-symptomatic heart failure that rocked us to our core. In the midst of our grief, my siblings and I made a commitment: we would each seek out cardiac care to understand our own heart health.
That decision changed everything.
A Diagnosis I Never Expected
In May of 2024, I began working with a cardiologist. This wasn’t just a checkbox appointment—he was relentless, compassionate, and thorough. After a series of advanced tests, he diagnosed me with something I had never heard of: Hereditary ATTR (hATTR) Cardiac Amyloidosis.
Looking back, the signs had been there: shortness of breath, fatigue, symptoms that had been chalked up to asthma or weight gain. I was told things like, “Just lose a few pounds,” or “You’re just getting older.” But this wasn’t about aging or lifestyle—it was something deeper, something inherited.
What is hATTR Cardiac Amyloidosis?
It’s a genetic condition where a protein called transthyretin (TTR) becomes unstable, misfolds, and forms deposits in the heart. Over time, these deposits stiffen the heart muscle and lead to heart failure. And the most dangerous part? It can sit silently in your body for years, with little or no symptoms—until it’s too late.
Here’s what many don’t know:
A specific mutation, Val122Ile, is found in approximately 3-4% of African Americans. That means people of African descent—like myself and my brother—are disproportionately affected by this disease, often without ever hearing its name.
No Cure, But There Is Treatment
There is no cure for hereditary ATTR cardiac amyloidosis, but there are medications that can slow the progression of the disease. My cardiologist fought hard to get me access to one of these medications—working directly with my insurance provider and Pfizer to make it affordable. Thanks to his advocacy, I’m receiving treatment. And I’m doing well.
Why I’m Sharing My Story
Because too often, we wait.
We wait until something goes wrong. We minimize symptoms. We normalize fatigue or shortness of breath. We don’t talk about our family’s health history. Or we think we’re “too young” or “too healthy” for heart trouble.
But heart disease—and especially hereditary ATTR amyloidosis—doesn’t always give you a warning. In my family, it took a tragic loss to reveal a hidden genetic condition.
My Message to You
Especially to my brothers and sisters of African descent:
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Get your heart checked. Even if you feel fine.
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See a cardiologist—not just your primary care doctor—if you have a family history of heart issues, or if you’re experiencing shortness of breath, swelling, or unexplained fatigue.
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Ask questions. Push for answers if something feels off.
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Don’t ignore your body. What you’ve been told is “asthma” or “just aging” could be something more.
This disease may be rare, but it’s not invisible—affecting us more than we realize.
I am not cured, but I’m living. I’m thriving. And most importantly, I’m aware—which is more than I could say a year ago.
If my story encourages even one person to make an appointment with a cardiologist, to ask one more question, or to push for one more test, then sharing it was worth it.
Your heart matters. Please, take care of it.