Anne Marie Carr

My name is Anne Marie Carr and I was diagnosed with hATTR amyloidosis in September 2015 at the age of 57. My journey with this disease began in the Spring of 2010, when I made a trip to my local library. There were some stairs I had to climb and I felt as though I was going to pass out. It took me half-an-hour to have the confidence to go home. After many consults with physicians and tests for heart conditions, asthma, viruses and more, I was finally diagnosed five and a half years later with hATTR amyloidosis.

Until my diagnosis, I had never heard of hATTR amyloidosis. Upon reflection, I realized that my mother had experienced symptoms in her 50s that were similar to the ones I was experiencing. Initially, I felt alone on this journey. It was like having a life sentence without a known expiry date, like living with a ticking timebomb not just for myself, but for my husband, my son and all my siblings. I'm sure many of you fellow hATTR warriors have felt like this.

What I came to realize is that we are NOT alone. I feel strongly that by having direct access to information about the disease, the pathway to diagnosis and treatment, and up-to-date clinical trial information, we can improve the outcomes of this very real and often fatal condition. We can and must be our own advocates to ensure we get what we need to live our best lives.