Sunrise Sunset — Jaime Christmas

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 to her mother’s doctor. It’s the patient who, despite…

In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their caregivers. I still recall the first diagnosed patient who…

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 New Zealand Amyloidosis Patients Association (NZAPA). I didn’t become…

Here in New Zealand, clinicians and advocates are pushing our country’s government to update its genetic editing and modification legislation. Historically, New Zealand has maintained some of the strictest gene technology regulations…

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 my life would involve being a wife and stay-at-home…

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 house, as the blinds are drawn up and the…

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 and shouts of joy from family members. Jaime…

According to the Murdoch Children’s Research Institute, there are more than 7,000 rare genetic diseases in the world, mostly affecting children. Additionally, about 300 million people worldwide live with a rare disease, and most…

As a columnist for FAP News Today since October 2020, I’ve written about various topics, all related to my experience caring for a spouse who had hereditary ATTR amyloidosis. My columns…

My late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013 and passed away on May 22, 2022. Those nine years were spent transitioning from having harmony in our marriage to navigating…

Over a year ago, I met someone. Darren James came into my life at a point when I was questioning whether I could build a life with another man after losing a spouse.