Columns

Yesterday, I took a tumble. Hands full, I hit the arm of the sofa just below my ribs, then my knee hit the floor. “Way…

When my late husband, Aubrey, was living with hereditary ATTR (hATTR) amyloidosis, no two days were ever alike. One day, he might manage reasonably…

Note: This column describes the author’s and his late brother’s own experiences with off-label diflunisal. Not everyone will have the same response to treatment. Consult…

In the middle of a heat wave in the United States, I flew to Taiwan to visit my parents. Even though I had just acclimated…

When my late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, our world changed overnight. We had a diagnosis, but not a…

I joined my mom’s cardiology appointment remotely last week. It marked the one-year anniversary of her diagnosis, and her doctor ordered a few tests to…

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

A good friend of mine sadly passed away last month in a hospital in New York City. When I received the news, I couldn’t believe…

I was sick for more than a week recently. The slow recovery gave me a glimpse into a chronic disease patient’s point of view —…

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…