Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
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…
If you are new to my column, my name is Jaime, and I was a caregiver to my husband, Aubrey, until he passed away on May 22. Aubrey had been diagnosed with hereditary ATTR amyloidosis. For nine years, he fought bravely against a disease that robbed him…
Some time has passed since I lost my husband on May 22. For nine years, Aubrey suffered from hereditary ATTR amyloidosis. Despite the toll of this disease on his body, he stayed positive. My late husband held on to the hope that a treatment or cure would…
After nine years of being a caregiver to a husband afflicted with hATTR amyloidosis, I can no longer lay claim to having that role. My beloved husband of 27 years, Aubrey, passed away on May 22. Even as I write this, I realize that moving forward, I won’t…
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