Lunar New Year celebrations, which began on Feb. 1, last for 15 days. As I write this on the eve of that date, I am…
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.
As an advocate for the New Zealand Amyloidosis Patients Association since 2019, I am acutely aware that when there is no center of excellence or coordinated care structure in a country, it compounds the already heavy burden on diagnosed individuals, particularly older couples trying to navigate this devastating disease. Even…

HATTR-PN
ColumnsTending to Plants Offers Me Comfort as a Caregiver
I recently counted the number of plants in my house and came up with 45. I’ll admit I’ve gone slightly overboard, but in my defense,…
HATTR-PN
ColumnsLove It or Hate It, Exercise Is Important for Caregivers
My alarm goes off at 5:30 every morning, and I mute it as quickly as possible to avoid waking my husband, Aubrey (if he’s even…
HATTR-PN
ColumnsThe Ups and Downs of Sleeplessness
Has the COVID-19 pandemic been keeping all of us up at night? According to an online forum by the Harvard T.H. Chan School of…
HATTR-PN
ColumnsWarm Weather Brings Both Discomfort and Gratitude
We have had warm summer weather here in Auckland, New Zealand, the City of Sails. It’s been clear and sunny, and…
HATTR-PN
ColumnsAs a Caregiver, I Want to Be Mindful When Misunderstandings Happen
A few days before the new year, I cleaned my backyard deck and accidentally toppled a cactus plant onto my foot. While I walked away…
HATTR-PN
ColumnsWe Must Make Lasting Memories, Through Whatever Trials We Face
Our Christmas tree is almost 24 years old, and it has traveled the world with us. I still remember the day I went shopping for…
HATTR-PN
ColumnsI’m Heading Into the New Year With an Attitude of Gratitude
As we head into the Christmas season, I want to be mindful that not all of my readers celebrate the holiday. Additionally, I know not…
HATTR-PN
ColumnsI’m Bringing Christmas Joy, Despite the Challenges We Face
I am adamant about not letting the COVID-19 pandemic and the ongoing issues with my husband’s health dampen our Christmas spirit. This year, I…
HATTR-PN
ColumnsFinding Meaning in Life With a Genetic Disease
My husband Aubrey’s hereditary ATTR amyloidosis journey is included in a forthcoming book titled “Rare Disease Drug Development: Clinical, Scientific, Patient, and Caregiver…
HATTR-PN
ColumnsI’m Embracing Optimism as We Approach the New Year
2021 has been a character-building year for me. I experienced challenges like never before, and I’m not just referring to the ones associated with the…
HATTR-PN
ColumnsWhy Intentionality Matters When Spending Time With an Ill Loved One
I spent half the morning figuring out our plan for Christmas. In recent years, it’s been a tradition for the whole family — including pets…
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