Sharing our amyloidosis stories has a profound ripple effect
Connections lead to greater awareness, support, and medical advances
In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their caregivers. I still recall the first diagnosed patient who reached out to me after the charity was established in 2020. We’d just launched NZAPA’s Facebook page, which has proven to be an invaluable resource for bringing together amyloidosis patients from all corners of New Zealand.
When my late husband, Aubrey, was diagnosed with hereditary ATTR (hATTR) amyloidosis in 2013, there was even less awareness surrounding the disease. Many of those affected felt isolated and unsure about their future. NZAPA and the Facebook page provided not only a community, but a wealth of information that wasn’t easily accessible elsewhere.
Aubrey passed away from complications of hATTR amyloidosis in 2022, but my advocacy work continues on behalf of him, our children, and everyone else in the same predicament. I fight for more targeted treatments, clinical trial opportunities, and better overall support for families with amyloidosis.
The power of connection
Five years later, our Facebook page remains a vital tool for outreach, education, and community building. The empowerment that patients and caregivers experience through connecting and sharing their stories is profound. When people facing similar health challenges come together, they create a supportive environment that fosters a sense of belonging.
This connection helps alleviate feelings of isolation that often accompany chronic illness, reminding people that they’re not alone on their journey. Sharing our experiences can also be liberating. For Aubrey, connecting with other patients allowed him to express his fears, frustrations, and triumphs, and both parties could validate each other’s emotions and experiences.
Hearing from others who have navigated similar paths offers hope and reassurance, showing that it’s possible to live with the uncertainties of a condition like ATTR amyloidosis.
Furthermore, these connections often lead to the exchange of valuable information. Be it practical advice regarding treatment options, navigating healthcare systems, or coping with day-to-day challenges, this collective knowledge empowers patients and caregivers to make more informed decisions about their health and care.
Learning from others often motivates people to share their own experience, raise awareness, and push for better resources and support. Some of these stories have been recorded and shared on our NZAPA YouTube channel, and they inspire me to keep taking action.
Finally, this camaraderie not only uplifts individual spirits but strengthens the community as a whole, creating a collective voice that advocates for change and treatment advances. In essence, the connections forged through shared experiences serve as a powerful reminder of resilience and solidarity, empowering both patients and caregivers to face their challenges with renewed strength and courage.
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.