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…
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,…
A diagnosis of familial amyloid polyneuropathy (FAP), or the onset of peripheral neuropathy symptoms, may cause patients to worry about missing out on the activities they enjoy. Spending time with family, hosting, cooking, and participating in backyard sports may seem daunting due to neuropathy…
The companionship of dogs and other pets may benefit patients by helping them cope as they manage the symptoms of familial amyloid polyneuropathy (FAP). But depending on when the pet becomes part of the family, its presence may also be a hindrance, unknowingly aggravating the patient’s pain. That’s especially…