I returned to the gym this week to work out. The last time I hit exercise classes and equipment was in 2016, shortly before my husband’s liver transplant, and three years after he was diagnosed with hereditary ATTR amyloidosis. Looking back, I have always been a gym junkie. I…
Sunrise Sunset — Jaime Christmas
Jaime Christmas is a patient advocate and columnist based in Auckland, New Zealand, with her cheeky doggie, Akira. She was a caregiver to a spouse who was afflicted with hATTR amyloidosis. Now she fights for equitable treatment and support for diagnosed patients and their caregivers. Although she now lives without the daily challenges of being a caregiver since her husband’s passing in 2022, she hopes to be still an encourager and listening ear to those presently walking the journey she knows only too well.
Hereditary diseases not only affect the body, but they also ripple through families, shaping relationships, identities, and mental health. I know this reality all too well. My late husband, Aubrey, was diagnosed in 2013 with hereditary ATTR amyloidosis, a genetic disorder caused by mutations in the TTR gene.

As a caregiver, have you ever felt like you’ve been thrown into the deep end and are treading water just to survive? Perhaps this overwhelming experience doesn’t happen regularly enough to leave an impression, but when it does, it can feel like the rug has been pulled out from underneath…
Today, I’d like to talk about caregiver burnout, which extends beyond the physical burnout of completing various caregiving tasks. It also entails more than feeling helpless when a caregiver is unable to meet the expectations of the rest of the family. Caregiver burnout stems from the gradual mental and…
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…
Recent Posts
- Heart rhythm problems common in adults with FAP-causing mutation
- The emotional burden of receiving negative genetic test results
- Analysis: RNA-targeted therapies are safe, effective for hATTR-PN
- Hereditary ATTR presents with more severe nerve damage
- Liver transplant, therapies mean longer life with hATTR, data show