I was diagnosed with Amyloidosis in 2018, age 52, following several years of visits for symptoms that couldn’t be explained. I knew something was wrong but routine check ups showed nothing abnormal. The amyloid was found through a routine colonoscopy, in my GI tract.
Amyloidosis was a word I’d never heard, and even after years of educationing myself following diagnosis I find it very complex and hard to understand.
As a very active woman, mother to three and grandmother to seven, I was heartbroken and scared initially. I had lost both parents & two siblings to cancers, I had made healthy life choices, this couldn’t be happening to me. Reality proved me wrong.
Finding a doctor who specializes in Amyloidosis is a must! After thorough testing to determine progression,I began a cocktail of chemotherapy medications which continued for 6 months. The results have been in my favor to date. Although stem cell transplant is an option heard often with this disease, it isnt a viable option for me due to IgM factors. Yet another rare factor. I’m determined to live « my normal » as much as possible. I’m focusing on living happy, relying on positive research, and new treatments as they become available. I adjust my routine when necessary, but refuse to be defeated! My main purpose when sharing my story is to bring awareness, in hope’s of earlier diagnosis for others.

Amy’s Disease aka Amyloidosis – Amy – United States