Columns

Amyloidosis awareness begins with patients and caregivers

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 fatigue, shares their story again and again so that the next person might be diagnosed sooner.

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…