When I first found myself in an intense caregiving role last year, I promised to stay strong for my mom, the patient, and my dad,…
Columns
On Mother’s Day last year, by chance or instinct, I was awake past midnight when I received the message that my mom, Feng-Ying Wu, had…
HATTR-PN
ColumnsATTR amyloidosis treatment exists, but for many, it’s not accessible
A transthyretin amyloidosis (ATTR) diagnosis is life-altering. This progressive disease causes abnormal protein deposits to slowly accumulate in structures such as the heart and nerves.
As an advocate for the New Zealand Amyloidosis Patients Association since 2019, I am acutely aware that when there is no center of excellence or coordinated…
HATTR-PN
ColumnsA look at the emotional and psychological effects of diagnosis
A diagnosis of hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN) between the ages of 30 and 60 can be profoundly life-altering. The gravity of the…
HATTR-PN
ColumnsThe emotional burden of receiving negative genetic test results
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…
HATTR-PN
ColumnsOur role as patient advocates is vital, but funding remains an issue
I recently celebrated the fifth anniversary of my work as a patient advocate for people diagnosed with amyloidosis in New Zealand. This journey began because…
HATTR-PN
ColumnsI wish my country could benefit from gains in amyloidosis treatment
I’ve just returned from an amyloidosis conference in Baveno, Italy, organized by the Amyloidosis Alliance. This biennial event — called the International ATTR…
HATTR-PN
ColumnsAmyloidosis awareness begins with patients and caregivers
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…
HATTR-PN
ColumnsSharing our amyloidosis stories has a profound ripple effect
In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their…
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