Columns

Life is full of twists and turns. I was a caregiver for nine years until this past May, when my husband passed away from hereditary ATTR amyloidosis. Aubrey was diagnosed in 2013, and despite the many challenges we both faced, we never once thought to give up. Unfortunately,…

I recently attended an amyloidosis scientific conference in Heidelberg, Germany, that was a productive and empowering experience. As a former caregiver to a spouse with hereditary ATTR amyloidosis and a patient advocate with New Zealand Amyloidosis Patients Association, learning about the advancements in the field of disease…

Two weeks after the passing of my husband, Aubrey, my four children decided that the company of a new puppy would be the best way to cheer me up. Looking back now, almost four months after Aubrey left us on May 22, Akira — an…

By the time this column is published, I will be halfway across the world, traveling to Heidelberg, Germany, for the International Symposium on Amyloidosis. It will be the first time I attend an international amyloidosis conference as a patient advocate leader without my husband alongside me. Sadly, Aubrey…

In my columns, I share my experience as a caregiver to a spouse who suffered from hereditary ATTR amyloidosis. Whenever I sit down at my desk to write, I say a little prayer that my stories will comfort readers, no matter the topic. I hope that others feel…

After I finish writing this column, I will meet a few friends for dinner. But socializing without my husband beside me still feels foreign. Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona, describes the grieving process as a way of learning how to be…

It has been very encouraging to witness treatment advancements that target ATTR amyloidosis. Although a cure is not currently available, pharmaceutical research shows promise in the development of drugs to slow the progression of amyloid deposits, which causes the disease. ATTR amyloidosis affects multiple organs in the…

I recently watched a documentary narrated by British naturalist David Attenborough about how climate change and deforestation negatively affect animal life on our planet. One clip featured walruses stranded on top of a cliff in the Arctic. Unaware of how high they are and confused by…

“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.” — Oprah Winfrey On May 22, I lost my husband, Aubrey, to hereditary ATTR amyloidosis. He was my best…

I lost my husband, Aubrey, on May 22. This period of adapting to him being gone has been somewhat challenging for me. Although I thought I had come to terms with it in the weeks following his death, grief has a knack for swinging back and hitting me…