World Amyloidosis Day isn’t just about advocacy; it’s also a celebration
Held Oct. 26, the awareness day calls for both remembrance and responsibility
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Some days on the calendar remind us of what matters most — and why we should fight for it. World Amyloidosis Day, held Oct. 26, is one of those days. As Helen Keller wrote, “Alone we can do so little; together we can do so much.”
For people living with amyloidosis, this day is about more than just raising awareness. It is about being seen, showing courage, and honoring the strength of a community that has often been overlooked.
When my late husband, Aubrey, was diagnosed with hereditary transthyretin amyloidosis in 2013, neither of us knew what this disease would mean for our family. Over the next nine years, we faced uncertainty, many medical appointments, and changing symptoms, and I felt the pain of watching someone I love slowly lose abilities we once took for granted.
Aubrey had a liver transplant in 2016. Like many families, we held on to hope. But by the end of 2019, we were told nothing more could be done.
Those words never left me, but they also made me determined. No patient or family should have to face a rare diagnosis alone.
Moving forward with purpose
When I established the New Zealand Amyloidosis Patients Association in 2020, its purpose was straightforward: to give patients and families a voice, provide current information on the condition, improve understanding, and challenge the inequalities surrounding diagnosis, treatment, and care.
Today, World Amyloidosis Day reminds me how important that purpose remains.
Awareness is more than just knowing a disease’s name. It means understanding that behind every delayed diagnosis is someone whose health may be worsening as they wait for answers. Every treatment decision affects a family hoping for more time. Every statistic represents a person with loved ones, dreams, and a life that matters.
Amyloidosis is often described as rare, but rarity should never diminish urgency. Its symptoms can resemble those of more common conditions, making it hard to recognize. Greater awareness among medical professionals and the public can encourage earlier investigation, appropriate specialist referrals, and, most importantly, a timely diagnosis.
And time matters.
Medical research has brought meaningful advances, particularly in treatments targeting transthyretin amyloidosis. In New Zealand, we still lack approved, funded access to targeted treatments, but what once seemed unimaginable is becoming possible for more patients worldwide. Yet scientific progress means little to someone who cannot access the treatment that could change their future.
This is why awareness must be accompanied by advocacy. We must keep asking difficult questions about equitable access, medicine funding, genetic testing, clinical trials, and health systems’ responsibility to recognize rare diseases. But World Amyloidosis Day should not focus solely on what remains unfinished.
It also deserves to be celebrated.
We celebrate the researchers who keep searching for answers, the clinicians who listen beyond the obvious symptoms, and the advocates who refuse to let patients become invisible. We celebrate caregivers whose work often goes unrecognized, yet whose strength upholds families through the most difficult moments.
Most importantly, we celebrate patients themselves. Those who live with steadfastness despite uncertainty, share their experiences so others feel less isolated, and remind us that a diagnosis does not erase a person’s identity or worth.
Aubrey passed away on May 22, 2022. His absence remains part of my everyday life, but so does the purpose born from our challenges together.
For me, this day is about both remembrance and responsibility. It honors those we have lost while reminding us that others are still waiting for answers, treatment, and hope. On Oct. 26, I encourage everyone to speak about amyloidosis, share a story, support a patient organization, or listen to someone affected by the condition.
Awareness begins with understanding, but its greatest achievement is action.
If our collective voices help even one family get an earlier diagnosis, find support, or access life-changing treatment, then World Amyloidosis Day is truly worth celebrating.
Note: Amyloidosis 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 Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to amyloidosis.
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