Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
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 a relationship wrought with challenges. We were encumbered not only by the stress of Aubrey’s…
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. My late husband, Aubrey, and I had been married for almost 27 years before he passed…
Oct. 26 isn’t just another day; it’s World Amyloidosis Day. As a leader of the New Zealand Amyloidosis Patients Association, I’m excited to use this day to raise awareness in our country and unite with our global community. Your support, especially from those in other countries who follow our group…
Since January, the amyloidosis association I lead here in New Zealand has seen our patient numbers grow like never before, primarily because of newer diagnostic tools and more awareness among doctors about the disease. We’re receiving more emails from diagnosed individuals seeking advice on what to do next,…
It’s winter here in New Zealand. I woke up to a thin sheet of ice covering the deck, staying frozen just long enough to glint in the morning sun. That happens when moisture trapped in the air cools drastically and the temperature drops below freezing overnight. Now that I live…
I’m happy. That’s the best way to describe my state at this stage of my life. When my husband, Aubrey, passed away on May 22, 2022, my whole world was stirred and uprooted. He’d been diagnosed with hereditary ATTR amyloidosis in 2013, and his disease journey took…
I’ve moved! It’s exciting, but the move was daunting because of the sheer amount of work that went into clearing out items from a place where my children grew up from 2007 onward. This place was our family home, housing much laughter, tears, and peace. History seeps through the walls,…
It’s summer here in Auckland, New Zealand, and as I look out the window at my weed-filled lawn, not only am I reminded that the grass needs mowing again, but also how time flies without qualms or quandary. It’s been 19 months since I lost my husband, Aubrey, to…
I recently had the pleasure of attending an Amyloidosis Alliance conference in Madrid, which brought together advocates from around the world who serve the transthyretin amyloidosis community. This includes the familial amyloid polyneuropathy (FAP) and amyloid light chain or primary amyloidosis communities. Attendees discussed the…
It has been 17 months since my husband, Aubrey, passed away due to complications of hereditary ATTR amyloidosis. Following his diagnosis in 2013, Aubrey’s journey was wrought with many untold challenges. His pain and struggle were visible to our family, including our four children. As his wife…
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