Patient Stories

Since starting HeartValveSurgery.com nearly twenty years ago, I have learned a lot about the heart. However, it was not until I received this email from David…

Systemic light chain (LC) amyloidosis (AL) is a disease where organs are damaged by an overload of a misfolded patient-specific antibody-derived LC, secreted by an…

When Emmalyn Hudson had a history project, she wrote about and portrayed Dr. Virginia Apgar.The choice of Apgar, originator of the Apgar score that evaluates…

Alice Odeke’s world was turned upside down when she was diagnosed with cardiac amyloidosis, a rare condition which has led to heart failure. The 58-year-old from…

Amara, you penned a post for our blog in May of 2022. Can you talk about what has changed with your mom since then?I’ll be honest. I’m heartbroken. The last few…

When Sally Cox was diagnosed with light chain amyloidosis (AL) in 2019, she was shocked. Not only had she never heard of the rare disease that causes abnormal…

In the realm of rare diseases like Amyloidosis, caregivers stand as pillars of strength, compassion, and support. Their unwavering dedication and selflessness often…

Having a genetic disease is one of life’s greatest calamities. I say this from my own experience, having been married for almost 27 years to someone who was…

– Family Health History Road Trip Program Aims to Inspire Conversations About Health History and Empower Families to Take Control of Their Health ––…

My hATTR story began in the mid-1960’s when my father, a healthy, strong, outdoorsy guy in his late 40’s started tripping, experiencing numbness, and having dizzy…