I recently celebrated the fifth anniversary of my work as a patient advocate for people diagnosed with amyloidosis in New Zealand. This journey began because of my late husband, Aubrey, who had hereditary ATTR amyloidosis. Out of desperation, we set out to access treatment for him. But without representation…
I’ve just returned from an amyloidosis conference in Baveno, Italy, organized by the Amyloidosis Alliance. This biennial event — called the International ATTR Amyloidosis Meeting for Patients and Doctors — brings together patients, families, patient advocates, clinicians, and pharmaceutical companies from around the world for two days of…
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.
In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their caregivers. I still recall the first diagnosed patient who reached out to me after the charity was established in 2020. We’d just launched NZAPA’s Facebook…
An automated message from LinkedIn recently reminded me that it’s been five years since I started my role as a patient advocate at the New Zealand Amyloidosis Patients Association (NZAPA). I didn’t become an advocate because it was a lifelong ambition, but rather out of necessity. My late husband,…
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…
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…
Through my roles as a caregiver for my late husband, Aubrey, and as an amyloidosis patient advocate, I’ve been transformed. I once assumed that my life would involve being a wife and stay-at-home mother, with a happy home and a couple of pets to boot. But I became disgruntled…
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,…
In my last column, I mentioned that my mother-in-law was recently diagnosed with rheumatoid arthritis. She already suffers from the symptoms of familial amyloid polyneuropathy (FAP), including itching and burning sensations in her hands and feet. The pain of her neuropathy symptoms makes it hard for her to walk…
