It has been 17 months since my husband, Aubrey, passed away due to complications of hereditary ATTR amyloidosis. Following his diagnosis in 2013, Aubrey’s journey was wrought with many untold challenges. His pain and struggle were visible to our family, including our four children. As his wife…

I recently accompanied my husband, Aubrey, to an appointment with a specialist at the hospital and noticed a sign taped to the wall in the waiting room. It was a word cloud graphic highlighting the practices that healthcare practitioners strive for to create a good experience for patients. As I…

As we enter the second half of October, I’m not quite sure how the end of the year has arrived so quickly. Time flies while caregiving. I care for my husband, Aubrey, who has hereditary ATTR amyloidosis. Though he was diagnosed in 2013, his disease onset occurred much earlier.

I lost my mother in May. Even as I type those words, I have not fully come to terms with it, as I have yet to receive closure. She passed away in Malaysia while I was thousands of miles away in New Zealand. COVID-19 travel restrictions had prevented me…

I count myself very fortunate to be in a position where I can speak to readers. Every week I sit at my desk, and in the stillness of the day, while the household is silent, I reflect back on my week or my life in general and compose my thoughts.

The hereditary nature of familial amyloid polyneuropathy (FAP), along with the severity and unpredictability of the disease, highlights the risk for great psychological stress among FAP patients and their family members, a recent study from Portugal suggests. Management of the disease, especially in FAP linked to the Val30Met mutation, needs…