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…
Sunrise Sunset – a Column by Jaime Christmas
HATTR-PN
ColumnsDoing Life Together When Diagnosed With Amyloidosis
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…
HATTR-PN
ColumnsStaying Positive as Someone Affected by Rare Disease
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)…
HATTR-PN
ColumnsI’m Hoping for a Better Future for Those With Amyloidosis
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…
HATTR-PN
ColumnsMy Husband and I Are Finding a New Balance in Life With Amyloidosis
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…
HATTR-PN
ColumnsSufferers Are More Than Their Afflictions
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…
HATTR-PN
ColumnsWhy It’s Important for the Rare Disease Community to Avoid Isolation
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…
HATTR-PN
ColumnsLooking at Life’s Challenges Through a Different Lens
I often write about the challenges I face as a carer to a spouse afflicted with hereditary ATTR amyloidosis. I highlight the heavy impact…
HATTR-PN
ColumnsI Share My Experience to Foster Compassion in the Rare Disease World
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…
HATTR-PN
ColumnsUnderstanding the Guilt That Can Accompany Hereditary Disease
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…
Recent Posts
- ATTR amyloidosis treatment exists, but for many, it’s not accessible
- New study links TTR mutation to nerve-related ATTR and better survival
- FDA lifts hold on clinical trial testing gene-editing therapy for ATTR-CM
- Supporters to ‘Light the Night’ this month for amyloidosis awareness
- Heart markers, nerve involvement linked to worse hATTR-CM outcomes