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…
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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…
HATTR-PN
ColumnsIn New Zealand, hope remains despite diagnosis, treatment barriers
An automated message from LinkedIn recently reminded me that it’s been five years since I started my role as a patient advocate at the…
HATTR-PN
ColumnsForging relationships at an amyloidosis conference
It’s been nearly a month since the charity I lead, the New Zealand Amyloidosis Patients Association (NZAPA), held a conference for patients and caregivers. The…
HATTR-PN
ColumnsAn experimental gene therapy gives me hope for my children
Here in New Zealand, clinicians and advocates are pushing our country’s government to update its genetic editing and modification legislation. Historically, New Zealand…
HATTR-PN
ColumnsConnecting with amyloidosis patients and caregivers in N.Z.
Through my roles as a caregiver for my late husband, Aubrey, and as an amyloidosis patient advocate, I’ve been transformed. I once assumed that…
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ColumnsManaging an increase in my mother-in-law’s FAP symptoms
The daily life of a familial amyloid polyneuropathy (FAP) caregiver isn’t always one of set routines. With the nature of the ailment and its…
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