Columns

If you are a fresh set of eyes and have newly stumbled onto my column, welcome to the world of an amyloidosis caregiver. My husband was diagnosed in 2013 with hereditary ATTR amyloidosis (hATTR) and had a liver transplant in 2016. As recent as five years ago, orthotopic…

I was in the car with my daughters earlier today, and as we turned onto a busy street, we saw cars already lining up to beat rush hour. It was one of the few occasions when I get to enjoy my kids’ company and feel carefree. For those reading my…

Lately I’ve had to remind my husband that he is not his disease. Aubrey was diagnosed in 2013 with hereditary ATTR amyloidosis, and after eight years, his impairment has become evident to those closest to him. Externally, though, Aubrey looks great. A stranger wouldn’t be able to tell how…

By the time this column is published, nearly two weeks will have passed since the kick-off of the two-day New Zealand Patients, Carers & Healthcare Practitioners Amyloidosis Conference. I helped organize this important event, and believe it was especially worthwhile because sufferers are too often misdiagnosed and mistreated, eventually dying…

I often write about the challenges I face as a carer to a spouse afflicted with hereditary ATTR amyloidosis. I highlight the heavy impact this disease has had on me as well as my four children. However, nothing beats the issues my husband faces day in and day out…

I count myself very fortunate to be in a position where I can speak to readers. Every week I sit at my desk, and in the stillness of the day, while the household is silent, I reflect back on my week or my life in general and compose my thoughts.

Our amyloidosis patient association here in New Zealand often holds routine catch-up sessions with the patients and carers that we support. I am a firm believer that mental health is a key aspect of an individual’s well-being. Providing an avenue for people to share their challenges and difficulties with…

I will always remember May 12 as a special day. That’s because last week, I spent that day with my daughter doing something close to our hearts. We woke up that morning and prepared a sign to represent our amyloidosis patient association here in New Zealand. We attended a…

It has been a week since my husband, Aubrey, and I received our first doses of the COVID-19 vaccine. We feel fortunate to have this opportunity as New Zealand’s Ministry of Health continues its nationwide vaccine rollout. Aubrey suffers from hereditary ATTR amyloidosis, and his condition has considerably…

When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has hereditary ATTR amyloidosis. Since his diagnosis in 2013, the disease has become more evident with each passing moment, not only in the physical sense for…