Community Stories

When people think about hereditary transthyretin amyloidosis (hATTR), they often focus on the physical decline of the patient. What is less visible is the emotional…

There is a moment in rare disease caregiving when you realize something unsettling: The system doesn’t know more than you do. In fact, it often knows far less.For…

If you or a loved one are living with hereditary ATTR amyloidosis with cardiomyopathy (hATTR-CM), you are likely well-acquainted with the challenges of heart health…

I was diagnosed with wild-type ATTR-CM 11 months ago. Here is my story about the path that took me to my diagnosis.In the summer of 2021, I noticed a bump on my…

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…

Hello! My name is Christine. I’ve been married to my wonderful husband for 35 years, and we have two children, ages 33 and 31, who have not been tested. I’m a proud…

When Gurmit Singh talks about Trillium Health Partners, he doesn’t mince words. “I owe my life to them,” he says without hesitation. His story backs him up.Gurmit…

My Amyloidosis journey began in the spring of 2015. The symptoms were there for months, but it was easy to look past them. I knew I didn’t feel right, but I didn’t…

For patients and physicians grappling with ATTR-cardiac amyloidosis (ATTR-CM), Attruby® (acoramidis) brings the possibility of hope.What does it mean to live…

On a medical mission in Guatemala, Alison was working 16-to-18-hour days on cement floors, with little relief from the heat or time to rest. Her legs began to swell…