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…
Columns
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…
HATTR-PN
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…
HATTR-PN
ColumnsResponding to my mother-in-law’s rheumatoid arthritis diagnosis
In my last column, I mentioned that my mother-in-law was recently diagnosed with rheumatoid arthritis. She already suffers from the symptoms of familial amyloid…
HATTR-PN
ColumnsWhy patients should tap into a sense of purpose in the new year
For neuropathy patients and caregivers, having a purpose in life may go a long way toward helping us manage peripheral neuropathy. Many familial amyloid…
HATTR-PN
ColumnsHow feelings of gratitude for the past are helping me move forward
It’s another stunning summer day here in New Zealand’s Waikato region. We’ve been blessed all week with clear skies and a warm breeze blowing through the…
HATTR-PN
ColumnsMy late husband’s legacy lives on in my children
December is a month of university graduation here in New Zealand. All the hard work, blood, sweat, and tears conclude in a cacophony of salutations…
According to the Murdoch Children’s Research Institute, there are more than 7,000 rare genetic diseases in the world, mostly affecting children. Additionally, about 300 million…
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