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Forging relationships at an amyloidosis conference

It’s been nearly a month since the charity I lead, the New Zealand Amyloidosis Patients Association (NZAPA), held a conference for patients and caregivers. The two-day event was made possible by the active participation of those living with various types of amyloidosis, including hereditary ATTR (hATTR), wild-type, and AL…

An experimental gene therapy gives me hope for my children

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 globally. Currently, genetic modification is heavily regulated under the Hazardous Substances and New Organisms Act…

Managing an increase in my mother-in-law’s FAP symptoms

The daily life of a familial amyloid polyneuropathy (FAP) caregiver isn’t always one of set routines. With the nature of the ailment and its painful peripheral neuropathy symptoms, there will be days when new issues arise or symptoms become more severe. Some of these problems may be unforeseen,…

Why patients should tap into a sense of purpose in the new year

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…

My late husband’s legacy lives on in my children

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…