For neuropathy patients and caregivers, having a purpose in life may go a long way toward helping us manage peripheral neuropathy. Many familial amyloid polyneuropathy (FAP) patients and caregivers, however, are forced to put a great deal of focus on simply surviving. My mother-in-law has tingling and burning…
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 backyard doors are open. View of the Waikato region in New Zealand. (Photo by Jaime…
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 Christmas celebrates with her son Joshua at his college graduation ceremony this month. (Courtesy of 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 of these diseases have no approved treatment. These numbers underscore the urgent need for more research…
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 touch on the emotional and physical challenges I faced as a caregiver, the adjustments we…
About a month ago, my father-in-law came down with what seemed like a cold. But his condition gradually worsened, which sent him to the hospital. There he was diagnosed with COVID-19. Because he takes on most of the caregiving duties for my mother-in-law, who has familial amyloid polyneuropathy,…
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…
For neuropathy patients, especially those who have familial amyloid polyneuropathy (FAP), the caregiver may become their arms, legs, eyes, and ears. While that may seem like a daunting task, there’s a benefit: Caregivers experience an emotional side to their daily duties that seems to make them one with patients.
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…