Hereditary diseases not only affect the body, but they also ripple through families, shaping relationships, identities, and mental health. I know this reality all too…
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
ColumnsOur role as patient advocates is vital, but funding remains an issue
I recently celebrated the fifth anniversary of my work as a patient advocate for people diagnosed with amyloidosis in New Zealand. This journey began because…
HATTR-PN
ColumnsI wish my country could benefit from gains in amyloidosis treatment
I’ve just returned from an amyloidosis conference in Baveno, Italy, organized by the Amyloidosis Alliance. This biennial event — called the International ATTR…
HATTR-PN
ColumnsAmyloidosis awareness begins with patients and caregivers
Advocacy starts with patients and caregivers. It’s the husband who asks the nurse, “Could the lightheadedness mean something more?” It’s the daughter who brings journal articles…
HATTR-PN
ColumnsSharing our amyloidosis stories has a profound ripple effect
In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their…
HATTR-PN
ColumnsIn New Zealand, hope remains despite diagnosis, treatment barriers
An automated message from LinkedIn recently reminded me that it’s been five years since I started my role as a patient advocate at the…
HATTR-PN
ColumnsForging relationships at an amyloidosis conference
It’s been nearly a month since the charity I lead, the New Zealand Amyloidosis Patients Association (NZAPA), held a conference for patients and caregivers. The…
HATTR-PN
ColumnsAn experimental gene therapy gives me hope for my children
Here in New Zealand, clinicians and advocates are pushing our country’s government to update its genetic editing and modification legislation. Historically, New Zealand…
HATTR-PN
ColumnsConnecting with amyloidosis patients and caregivers in N.Z.
Through my roles as a caregiver for my late husband, Aubrey, and as an amyloidosis patient advocate, I’ve been transformed. I once assumed that…
HATTR-PN
ColumnsHow feelings of gratitude for the past are helping me move forward
It’s another stunning summer day here in New Zealand’s Waikato region. We’ve been blessed all week with clear skies and a warm breeze blowing through the…
HATTR-PN
ColumnsMy late husband’s legacy lives on in my children
December is a month of university graduation here in New Zealand. All the hard work, blood, sweat, and tears conclude in a cacophony of salutations…
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