In my columns, I share my experience as a caregiver to a spouse who suffered from hereditary ATTR amyloidosis. Whenever I sit down at my desk to write, I say a little prayer that my stories will comfort readers, no matter the topic. I hope that others feel…
My husband Aubrey’s hereditary ATTR amyloidosis journey is included in a forthcoming book titled “Rare Disease Drug Development: Clinical, Scientific, Patient, and Caregiver Perspectives.” He feels very touched that the editor saw fit to reach out to him. Emotional healing occurs when we can provide insight into a…
If you are a longtime caregiver for a loved one with hereditary ATTR amyloidosis, you are probably knowledgeable about the condition. My name is Jaime, and I have been a caregiver to my husband, Aubrey, who has been afflicted with the disease for about 10 years. Although Aubrey wasn’t…
The 3rd European ATTR Amyloidosis Meeting for Patients and Doctors was held virtually on Sept. 6-8. Because the New Zealand Amyloidosis Patients Association, which I lead, is associated with the Amyloidosis Alliance, we were invited to participate in this global, online event. If not for COVID-19 travel restrictions,…
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 beings. The people I’ve met while running this charity, established in 2019, have enriched my life and pushed me further than I could’ve ever imagined.
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 Practitioners Amyloidosis Conference. I helped organize this important event, and believe it was especially worthwhile because sufferers are too often misdiagnosed and mistreated, eventually dying…