Columns

I’ve just returned from an amyloidosis conference in Baveno, Italy, organized by the Amyloidosis Alliance. This biennial event — called the International ATTR…

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…

In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their…

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…

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…

Here in New Zealand, clinicians and advocates are pushing our country’s government to update its genetic editing and modification legislation. Historically, New Zealand…

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…

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…

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…

For neuropathy patients and caregivers, having a purpose in life may go a long way toward helping us manage peripheral neuropathy. Many familial amyloid…