Amyloidosis is a word I wish I’d never had to learn. Between its many forms—like transthyretin cardiac amyloidosis (ATTR-CM), hereditary ATTR (hATTR), and AL amyloidosis—the medical jargon can feel like a foreign language. But for me, it’s personal. This disease claimed my father’s life in 2010, and a decade later, it changed mine.
My name is Faye. I’m a wife, a mom to two amazing boys we adopted in 2013, and I’m living with ATTR-CM. I never imagined this would be part of my story, but here I am—writing not just to share my journey, but to help others find answers sooner than I did.
My father’s battle began long before doctors understood amyloidosis the way they do now. I watched as he endured countless tests and biopsies, searching for why his body was betraying him. He had swelling, shortness of breath, and weak legs that seemed to fail him overnight. When his 13th biopsy finally revealed amyloid deposits, we thought we had clarity—but the diagnosis was initially mistaken for AL amyloidosis instead of the hereditary form. By the time it was corrected, his heart was already failing.
Before he passed, my father urged my sister and me to get tested for the gene mutation that causes hereditary amyloidosis. My sister did. I didn’t. Fear convinced me that ignorance was safer than the truth. When her test came back positive, I told myself that meant I must be safe—it’s a 50/50 chance, after all. Looking back, I realize how much I misunderstood both the odds and the cost of waiting.
In 2018, I began retaining fluid. I gained nearly 25 pounds in a month, and my stomach became rock-hard. My doctor sent me to a lymphologist, but my symptoms worsened—shortness of breath, exhaustion, and swelling that wouldn’t go away. An echocardiogram revealed thickening in my heart’s left ventricle, but no one thought to connect it to ATTR-CM.
It was my sister who finally said what I was too afraid to consider: “Faye, this sounds just like Dad.”
Even then, fear kept me silent. I worried that disclosing my family history could affect insurance or complicate care. But with her encouragement, I finally ordered the genetic test. It sat unopened on my kitchen table for two weeks. The day I mailed it off, I cried the whole way to the mailbox.
hen my doctor called to tell me I tested positive, it was during the height of the COVID-19 shutdown in March 2020. I was home alone, staring at the computer screen, trying to process the words that would change everything. I thought I was going to die.