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…
Since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, my journey as his caregiver has taken me to some difficult places. The biggest challenge has been letting go of my expectations of what our relationship should look like and accepting what it has…
In his book “1984,” George Orwell wrote, “Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In the face of pain there are no heroes.” I pondered writing about this…
As I write this, my husband, Aubrey, is undergoing surgery to remedy his congested nasal passages, which have reduced the oxygen flow into his lungs. It will take about 70 minutes. Turbinate reduction surgery is safe and straightforward for most people. Usually, the patient is monitored for a few…
Leading an association that supports and advocates for rare disease patients while being a caregiver to one certainly has shaped my outlook on life. To a larger extent, these roles have allowed me to find my calling within the campaign space, where I’m pushing for positive changes to the present…