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…
I often write about the challenges I face as a carer to a spouse afflicted with hereditary ATTR amyloidosis. I highlight the heavy impact this disease has had on me as well as my four children. However, nothing beats the issues my husband faces day in and day out…
I count myself very fortunate to be in a position where I can speak to readers. Every week I sit at my desk, and in the stillness of the day, while the household is silent, I reflect back on my week or my life in general and compose my thoughts.
Our amyloidosis patient association here in New Zealand often holds routine catch-up sessions with the patients and carers that we support. I am a firm believer that mental health is a key aspect of an individual’s well-being. Providing an avenue for people to share their challenges and difficulties with…
I will always remember May 12 as a special day. That’s because last week, I spent that day with my daughter doing something close to our hearts. We woke up that morning and prepared a sign to represent our amyloidosis patient association here in New Zealand. We attended a…
It has been a week since my husband, Aubrey, and I received our first doses of the COVID-19 vaccine. We feel fortunate to have this opportunity as New Zealand’s Ministry of Health continues its nationwide vaccine rollout. Aubrey suffers from hereditary ATTR amyloidosis, and his condition has considerably…
When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has hereditary ATTR amyloidosis. Since his diagnosis in 2013, the disease has become more evident with each passing moment, not only in the physical sense for…
One activity I really enjoy doing is going for coffee dates with my girlfriends. This allows me to take a break from my normal routine and spend time with those in my support network. As a carer, having people to confide in and share life’s journey with is vitally important…
Some life events create impressions that stay with us forever. Our experiences, encounters, and journeys mold our character and hone our personality, making each of us into who we are today. What makes or breaks us when we face trials may be influenced by the particular calamity, but much…
2013 was a landmark year for my husband, Aubrey, and me. That October, we received confirmation that Aubrey has hereditary ATTR amyloidosis. The results were based on a biopsy of his gastrointestinal cells using the Congo red stain method of amyloid detection. I felt numb after hearing the…