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I joined my mom’s cardiology appointment remotely last week. It marked the one-year anniversary of her diagnosis, and her doctor ordered a few tests to…

When people think about hereditary transthyretin amyloidosis (hATTR), they often focus on the physical decline of the patient. What is less visible is the…

A good friend of mine sadly passed away last month in a hospital in New York City. When I received the news, I couldn’t believe…

I was sick for more than a week recently. The slow recovery gave me a glimpse into a chronic disease patient’s point of view —…

There is a moment in rare disease caregiving when you realize something unsettling: The system doesn’t know more than you do. In fact, it often…

Illness casts a shadow over the lives of both the patient and the caregiver. In my family’s situation, my mom, Feng-Ying Wu, is the patient,…

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,…

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…

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…