Those of us who are caregivers have many of the same underlying goals. But while we all care for our ill loved ones, our…
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
ColumnsA look at the emotional and psychological effects of diagnosis
A diagnosis of hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN) between the ages of 30 and 60 can be profoundly life-altering. The gravity of the disease coincides with a period traditionally devoted to building, enjoying, or securing one’s future, amplifying the impact. These decades are often defined by marriage, raising…

HATTR-PN
ColumnsThe Importance of Mental Pliability for Caregivers
I returned to the gym this week to work out. The last time I hit exercise classes and equipment was in 2016, shortly before my…
HATTR-PN
ColumnsAs Caregivers, Anticipating the Worst Allows Us to Be Prepared
As a caregiver, have you ever felt like you’ve been thrown into the deep end and are treading water just to survive? Perhaps this overwhelming…
HATTR-PN
ColumnsHow to Prevent Burnout When Caring for a Loved One
Today, I’d like to talk about caregiver burnout, which extends beyond the physical burnout of completing various caregiving tasks. It also entails more than…
HATTR-PN
ColumnsDoing Life Together When Diagnosed With Amyloidosis
In my role as a leader of the New Zealand Amyloidosis Patients Association, I’ve had the privilege of forging relationships with many wonderful human…
HATTR-PN
ColumnsStaying Positive as Someone Affected by Rare Disease
No matter what you’re going through or where you are, know you are not alone. Suffering from a rare illness like hereditary ATTR amyloidosis (hATTR)…
HATTR-PN
ColumnsI’m Hoping for a Better Future for Those With Amyloidosis
If you are a fresh set of eyes and have newly stumbled onto my column, welcome to the world of an amyloidosis caregiver. My husband…
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ColumnsMy Husband and I Are Finding a New Balance in Life With Amyloidosis
I was in the car with my daughters earlier today, and as we turned onto a busy street, we saw cars already lining up to…
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ColumnsSufferers Are More Than Their Afflictions
Lately I’ve had to remind my husband that he is not his disease. Aubrey was diagnosed in 2013 with hereditary ATTR amyloidosis, and after…
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ColumnsWhy It’s Important for the Rare Disease Community to Avoid Isolation
By the time this column is published, nearly two weeks will have passed since the kick-off of the two-day New Zealand Patients, Carers & Healthcare…
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ColumnsLooking at Life’s Challenges Through a Different Lens
I often write about the challenges I face as a carer to a spouse afflicted with hereditary ATTR amyloidosis. I highlight the heavy impact…
HATTR-PN
ColumnsI Share My Experience to Foster Compassion in the Rare Disease World
I count myself very fortunate to be in a position where I can speak to readers. Every week I sit at my desk, and in…
Recent Posts
- Early diagnosis, treatment improves survival in ATTR-CM: Study
- FDA lifts clinical hold on Phase 3 trial of nex-z for hATTR-PN
- Nerve damage often goes unrecognized in adults with hATTR-CM
- MRI detects brain changes before hATTR-PN symptoms begin
- Targeted therapies improve survival and heart outcomes in ATTR-CM