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…
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
ColumnsUnderstanding the Guilt That Can Accompany Hereditary Disease
Our amyloidosis patient association here in New Zealand often holds routine catch-up sessions with the patients and carers that we support. I am a…
HATTR-PN
ColumnsWe Won’t Stop Fighting for Positive Change in Healthcare Funding
I will always remember May 12 as a special day. That’s because last week, I spent that day with my daughter doing something close to…
HATTR-PN
ColumnsCourage Is Necessary When Making Difficult Decisions
It has been a week since my husband, Aubrey, and I received our first doses of the COVID-19 vaccine. We feel fortunate to have…
HATTR-PN
ColumnsA Little Understanding Can Go a Long Way for Rare Disease Sufferers
When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has…
HATTR-PN
ColumnsAs a Caregiver, I’m Learning to Chase Happiness
One activity I really enjoy doing is going for coffee dates with my girlfriends. This allows me to take a break from my normal routine…
HATTR-PN
ColumnsWhen Faced With Trials as a Caregiver, I Embrace Resilience
Some life events create impressions that stay with us forever. Our experiences, encounters, and journeys mold our character and hone our personality, making each…
HATTR-PN
ColumnsThe Difference Between Being a Caregiver and Being Caring
2013 was a landmark year for my husband, Aubrey, and me. That October, we received confirmation that Aubrey has hereditary ATTR amyloidosis. The results were…
HATTR-PN
ColumnsLetting Go of Expectations Helps Me Embrace My Husband’s Changes
Since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, my journey as his caregiver has taken me to some…
HATTR-PN
ColumnsWhen Faced With Unrelenting Pain, There Are No Heroes
In his book “1984,” George Orwell wrote, “Of pain you could wish only one thing: that it should stop. Nothing in…
HATTR-PN
Columns3 Ways I Strive to Live Intentionally Amid Amyloidosis Challenges
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.
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…
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