Connecting with amyloidosis patients and caregivers in N.Z.
An upcoming conference is an opportunity for our community to gather
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 my life would involve being a wife and stay-at-home mother, with a happy home and a couple of pets to boot. But I became disgruntled and angry after Aubrey was diagnosed with hereditary ATTR (hATTR) amyloidosis in 2013. My life had been upended, my husband was dying, and no one seemed to be trying hard to help him get better.
Aubrey and I founded the New Zealand Amyloidosis Patients Association (NZAPA) charity in 2020 after beginning our advocacy in October 2019, frustrated that targeted treatments and clinical trials were largely unavailable here in New Zealand. Something had to be done to rectify the situation.
In the first few months after establishing the organization, we were contacted by many others from our country who’d also been diagnosed with amyloidosis. I’d thought that Aubrey was the only one suffering from this disease when, unbeknownst to me, there were others.
A chance to meet fellow patients and caregivers
Fast forward to today. Although Aubrey passed away in 2022, my advocacy work continues.
Unfortunately, we lack the resources here in New Zealand to collect data and determine the actual number of patients diagnosed with all types of amyloidosis in our country. However, according to the specialists we work with at NZAPA, between 50 and 60 people here have been diagnosed with AL amyloidosis, also known as amyloid light chain or primary amyloidosis. In addition, they estimate that about 400 New Zealanders are diagnosed with TTR cardiomyopathy, while many more patients likely remain undiagnosed.
Given these numbers, we must work toward making this condition better known in medical and public spaces. One of the best ways to tackle that is to facilitate medical conferences that patients, caregivers, and clinicians can attend, either in person or online, to learn more about amyloidosis. We had our first New Zealand conference in 2021, and we’ll hold our second one in May.
These conferences provide attendees with the opportunity to glean information from experts and, more importantly, form connections and friendships with other patients and caregivers.
Living with a rare condition can be lonely; even caregivers may feel alienated and depressed. Being in a room full of people who understand the unique challenges we face can be particularly comforting.
I hope that spending two days together in May will fill everyone’s hearts and leave our community feeling encouraged.
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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