Learning to face a new year without my husband
In the blink of an eye, we’re already approaching the third month of 2023. For me, the ushering in of a new year came with poignancy and a new aspiration to do better as I move forward into a…
Sunrise Sunset — Jaime Christmas
Jaime Christmas is a patient advocate and columnist based in Auckland, New Zealand, with her cheeky doggie, Akira. She was a caregiver to a spouse who was afflicted with hATTR amyloidosis. Now she fights for equitable treatment and support for diagnosed patients and their caregivers. Although she now lives without the daily challenges of being a caregiver since her husband’s passing in 2022, she hopes to be still an encourager and listening ear to those presently walking the journey she knows only too well.
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4 lessons I learned while caregiving for a chronically ill spouse
My late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013 and passed away on May 22, 2022. Those nine years were spent transitioning from having harmony in our marriage to navigating a relationship wrought with…
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How We Navigated My Late Husband’s Amyloidosis Diagnosis
I have previously written about the importance of staying positive despite our circumstances. Whether you are a patient or a caregiver to a loved one with a chronic illness, keeping yourself above the waterline to avoid drowning…
Months After Losing My Husband, I’m Finding My Footing Once Again
This column will be my 94th since starting “Sunrise, Sunset.” My caregiving experience has taken me through many ups and downs and countless joys and heartbreaks. I’ve had to reset and reestablish my footing many times. I’ve…
Promoting Amyloidosis Awareness to Create a Better Future
Late last week, to drive disease awareness, I took to the streets in downtown Auckland, New Zealand, and asked random people if they had heard of amyloidosis. None of the 15 strangers who were kind enough to answer…
Finding Silver Linings in Life, Even After Suffering a Loss
It’s been over four months since I lost my husband, Aubrey, to hereditary ATTR amyloidosis. The vacuum he’s left behind in the lives of our four children and me may not be immediately apparent, but one only…
Why Advocacy Is Important for New Zealanders With Rare Diseases
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…
How the Pharmaceutical Industry Can Help Patient Advocates
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…
Allowing Time to Let Go After the Loss of a Husband
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…
Collaboration Between Patient Advocates and the Scientific Community Brings Me Hope
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…
The Importance of Connecting With People Who Understand the Rare Disease Journey
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…
Living in the Present Can Help Us Better Manage the Future
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…
Early Diagnosis, Treatment Access, and Self-advocacy Are the Pillars of Hope With ATTR Amyloidosis
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…
