Sunrise Sunset – a Column by Jaime Christmas

When a family receives a diagnosis like hereditary ATTR amyloidosis, time seems to change. The future, which once felt certain, suddenly becomes unclear. Plans…

When my late husband, Aubrey, was living with hereditary ATTR (hATTR) amyloidosis, no two days were ever alike. One day, he might manage reasonably…

When my late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, our world changed overnight. We had a diagnosis, but not a…

When people think about hereditary transthyretin amyloidosis (hATTR), they often focus on the physical decline of the patient. What is less visible is the…

There is a moment in rare disease caregiving when you realize something unsettling: The system doesn’t know more than you do. In fact, it often…

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.

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…

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…

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…

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…