In my role as a leader of the New Zealand Amyloidosis Patients Association, I’ve had the privilege of forging relationships with many wonderful human beings. The people I’ve met while running this charity, established in 2019, have enriched my life and pushed me further than I could’ve ever imagined.
No matter what you’re going through or where you are, know you are not alone. Suffering from a rare illness like hereditary ATTR amyloidosis (hATTR) is filled with daily challenges, and no two days are alike. I know this not because I am a sufferer but because my spouse was…
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…
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