As I write this, my husband, Aubrey, is undergoing surgery to remedy his congested nasal passages, which have reduced the oxygen flow into his lungs.
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.
HATTR-PN
ColumnsATTR amyloidosis treatment exists, but for many, it’s not accessible
A transthyretin amyloidosis (ATTR) diagnosis is life-altering. This progressive disease causes abnormal protein deposits to slowly accumulate in structures such as the heart and nerves. Left untreated, ATTR cardiomyopathy (ATTR-CM) can shorten life expectancy to within a few years after diagnosis. My late husband, Aubrey, was diagnosed with…

HATTR-PN
ColumnsCreate an Environment Where You Can Live Well With Rare Disease
Leading an association that supports and advocates for rare disease patients while being a caregiver to one certainly has shaped my outlook on life. To…
One of my greatest accomplishments in life is being a mother to four amazing individuals. I cannot give enough credit to my kids for handling…
HATTR-PN
ColumnsThe Importance of Maintaining Our Well-being as Caregivers
Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it…
HATTR-PN
ColumnsThe Importance of Giving a Voice to Patients and Carers
A few days ago, I had the honor of presenting at this year’s Patients as Partners Europe virtual conference, an industry forum centered on…
HATTR-PN
ColumnsStaying the Course Despite the Trials We Face as Caregivers
Earlier today, I had the privilege of listening to a fellow carer share the mental, emotional, and physical trials she experienced while supporting…
HATTR-PN
ColumnsThings I Wish I Knew at the Start of Our Amyloidosis Journey
It is a summer morning here in New Zealand. As I write this, a cool, gentle breeze blows through the house, and I am being…
HATTR-PN
ColumnsSearching for Peace Despite Chronic Sleep Deprivation
Sleep is an essential part of life that comes so naturally, from the moment we come into being. Yet sometimes we forget the impact that…
HATTR-PN
ColumnsThe Beauty of Healing Through Language
I can hear the shower going upstairs as I sit at my writing desk in my downstairs office. It is funny how the sound of…
HATTR-PN
ColumnsIn the New Year, I Will Focus on What Is True
2020 is almost at an end. In a few weeks, we will celebrate the holiday season, and before we know it, 2021 will be upon…
HATTR-PN
Columns‘Change the Way You Think About It’
“Surprise!” I watched familiar faces filter into the room where I stood stunned, not expecting the birthday event that was unfolding before me. I turn…
HATTR-PN
ColumnsTomorrow the Shadows Will Be Gone
I feel the coolness of the glass against my forehead. The shower is pelting warmth against my skin, but the water doesn’t feel very soothing…
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