Amyloidosis awareness begins with patients and caregivers

Advocacy starts with patients and caregivers. It’s the husband who asks the nurse, “Could the lightheadedness mean something more?” It’s the daughter who brings journal articles to her mother’s doctor. It’s the patient who, despite fatigue, shares their story again and again so that the next person might be diagnosed sooner.

My journey as a caregiver began in 2013 when my late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis. Back then, there was little knowledge surrounding the condition here in New Zealand. For healthcare professionals, awareness of rare diseases often begins outside of medical schools and textbooks. Instead, it typically starts with patients and caregivers who refuse to stay silent.

In our case, after almost seven years of asking for targeted treatment that never arrived on our shores, Aubrey and I decided that the only way to make headway was to start a charity that represents people with the condition. We officially launched the New Zealand Amyloidosis Patients Association at the beginning of 2020.

Recommended Reading

August 10, 2022 Columns by Jaime Christmas

Early Diagnosis, Treatment Access, and Self-advocacy Are the Pillars of Hope With ATTR Amyloidosis

Why our voices matter

Many nurses and doctors may only encounter amyloidosis once in their careers, so the lived experiences of patients and caregivers become powerful teaching tools. Each story shared, whether in a clinic, at a conference, or even through a casual conversation, plants a seed of awareness. And sometimes, that seed is what makes a healthcare professional pause, recognize the signs, and change the course of someone’s life.

These conversations don’t just increase knowledge; they ripple outward into real change. When clinicians hear patients and their families discuss delayed diagnoses, the struggles of navigating the healthcare system, or their desperation for new therapies, it sparks action. Nurses start asking better questions. Doctors push for earlier referrals. Care teams take a stand for access to medications. Awareness builds momentum, and momentum can open doors to treatments that once felt out of reach.

But this journey isn’t easy. It can be exhausting to continually explain, educate, and push against barriers. There are days when I feel like no one is listening, days when new treatments are denied for New Zealanders or when awareness campaigns fall flat. Patients and caregivers often carry this weight while managing their own health battles, which makes the advocacy work even more pressing.

And yet, despite the struggles, some moments shine so brightly. The phone call informing a family that their loved one has been accepted into a clinical trial. The doctor who recognizes amyloidosis early because of something they once learned from a patient. The joy of standing in a room filled with nurses, doctors, and patients united for the same cause. These moments remind us that change is possible, that awareness doesn’t just spread knowledge — it saves lives.

Amyloidosis awareness is not a campaign that belongs only to institutions or medical societies. It belongs to us, the patients, caregivers, and families who turn personal pain into shared purpose. By speaking out, we light the path for healthcare professionals to follow. And together, step by step, story by story, we shape a future where treatment is accessible, diagnosis comes sooner, and no one feels invisible.

Because every conversation matters. Every story matters. And every victory, no matter how small, is worth celebrating.

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.