My Journey with Amyloidosis: Turning Fear Into Purpose

Amyloidosis is a word I wish I had 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 is personal. This disease claimed my father’s life in 2010, and a decade later, it changed mine.

My name is Faye. I am a wife, a mom to two amazing boys we adopted in 2013, and I am 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 journey and search for answers

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 did not. 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.”

From fear to action: My ATTR-CM diagnosis and mission

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.

When 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.

At the time, even my doctor didn’t know much about the disease, but to her credit, she dove in—reading, researching, learning everything she could. Today, her knowledge rivals that of many specialists. Together, we built a path forward.

Getting a diagnosis like ATTR-CM forces you to choose how you’ll respond. You can let it steal your peace, or you can fight for your purpose. I decided to fight. For two years before my diagnosis, I went from doctor to doctor without answers. That lost time weighs heavily on me, but it also fuels me. Early diagnosis changes lives because treatments can slow the progression of this disease. That’s why I now focus on education and awareness— so that others don’t have to face the same confusion, fear, or delay.

By putting a face to this disease, I feel like I’m continuing the work my father started.

My story has a purpose

Today, I’m learning to embrace the life I have, not the one I thought I’d have. My husband, Brad, has been my constant— living out our vows with grace and humor. Our boys, now 16 and 14, remind me daily why I keep going. And our dog, Snake (yes, that’s really her name), listens without judgment to every late-night prayer and every hope I whisper.

I don’t have control over what this disease brings, but I do have control over how I live through it— with faith, gratitude, and determination. I once felt completely alone in this diagnosis, but now I know my story has a purpose: to help others recognize the signs, to encourage early testing, and to show that even in the face of fear, there is still life— and hope— beyond the diagnosis.