Our local association has a part to play in World Amyloidosis Day
Aligned with global networks, we hope to raise awareness, improve treatments
Oct. 26 isn’t just another day; it’s World Amyloidosis Day. As a leader of the New Zealand Amyloidosis Patients Association, I’m excited to use this day to raise awareness in our country and unite with our global community. Your support, especially from those in other countries who follow our group on social media, is invaluable in our fight against amyloidosis.
When the association was born in 2019, it was a dream shared by my late husband, Aubrey, and me. We wanted to put New Zealand on the map because of its needy population of people diagnosed with amyloidosis. We were also inspired by our own journey through hereditary ATTR amyloidosis, Aubrey’s disease, which was made more challenging because of our nation’s lack of awareness and treatment opportunities. That led us to form the association.
Back then, people with amyloidosis were treated for their symptoms alone, and doctors often struggled to help them. The diagnostic odyssey could stretch up to five years. One patient we support waited 18 years before he finally received the correct diagnosis. That’s why our association advocates for improved treatment options, to ensure that they can endure such a long wait.
The wait for a correct diagnosis is a period of uncertainty, stress, frustration, and sometimes anger for patients and their families. In Aubrey’s case, the delay weakened his heart and autonomic nervous system. His health declined within a short period.
Patients too often feel isolated and are left to figure out options on their own. As amyloidosis tends to affect those in an older age bracket, they may find it daunting to use modern technology, such as a computer search for information. Even when they can find the condition online, the information there can be confusing and alarming.
Many of those with this rare condition also fear for their offspring, which can lead them to overwhelming guilt. We have four children, and here’s my greatest hope as their mother: that if they’re tested and found to carry the disease’s mutated gene, targeted treatment or even a cure will be available.
Having an awareness day devoted to a rare disease, such as this one, is vital. In our case, it gives the association the chance to bolster society’s awareness of critical amyloidosis subjects, promote our cause, and help the wider public show support.
Our local efforts
Here in New Zealand, our local association will run successive visual campaigns leading up to the date. As we align our agenda alongside the European members of the Amyloidosis Alliance, perhaps the coordinated global approach will offer hope for those afflicted with the disease.
By commemorating World Amyloidosis Day, we’ll give a voice to those affected by the illness and to the caregivers who faithfully attend to the needs of their loved ones. It will highlight this diabolical condition so that gaps within healthcare systems can be identified and fixed. That would significantly help patients access medicine and wraparound care.
The ancient Greek philosopher Aristotle said, “The ultimate value of life depends upon awareness and the power of contemplation rather than upon mere survival.”
We’ve got a little over six weeks to prepare. Come Oct. 26, let’s all do our part.
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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Satish Chandra
Would like to collaborate.as a patient of AL.Amyloidosis and Founder of Amyloidosis Support Group of India. We may request Amyloidosis Alliance for a Global Virtual Webinar and request.WHO / UN to consider taking forward the agenda of combatting Amyloidosis across the Globe.