No one in the amyloidosis community needs to go it alone

When my late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, our world changed overnight. We had a diagnosis, but not a community.

There were no online forums filled with people who understood the condition. There were no caregivers sharing practical advice about managing symptoms, navigating appointments, or coping with the emotional roller coaster of a rare disease. There wasn’t a place where I could ask, “Has anyone else experienced this?” and receive a response from someone who had walked the same path.

There was, however, loneliness.

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Anyone living with or caring for someone who has a rare disease knows that loneliness isn’t simply about being physically alone. It’s the feeling that the rest of the world continues as normal while your own life has been turned upside down. Friends and family care deeply, but they often can’t fully understand the weight of watching someone you love slowly lose pieces of themselves to a disease they’ve never even heard of.

Living in New Zealand amplified that feeling. Amyloidosis was virtually unknown here when Aubrey was diagnosed. Many healthcare professionals had never encountered the condition, and there was little information available locally. Every appointment felt like another reminder that we were navigating unfamiliar territory, often without a map. We spent countless evenings searching for answers, hoping to find someone, somewhere, who understood what we were experiencing.

‘You’re not alone’

Looking back, I often wonder how different those early years might’ve felt if we’d had access to a global community like the Amyloidosis News Today Forums. One of the greatest gifts another patient or caregiver can offer is understanding. There is enormous comfort in hearing someone say, “We’ve been there, too.” That simple sentence can dissolve months of isolation.

Whether you’re a patient learning to adapt to life after diagnosis or a caregiver trying to balance love, responsibility, exhaustion, and hope, connecting with others reminds us that our feelings are valid. It reminds us that asking questions is not a sign of weakness. It shows us that there are people across the world who genuinely celebrate our victories and understand our setbacks because they’ve experienced them, too.

Throughout my years writing for Bionews, the parent company of this website, I’ve often shared that caregiving transformed me. It required me to become an advocate, a researcher, and sometimes even an educator. Yet some of the most valuable lessons I learned didn’t come from textbooks or medical journals. They came from conversations with other people living this reality. Those shared experiences helped me feel seen at a time when I desperately needed it. That is why I am so passionate about helping build the Amyloidosis News Today Forums.

These forums are more than an online discussion board. They are a place where patients, caregivers, family members, and friends can introduce themselves, ask questions without judgment, exchange practical tips, celebrate milestones, and support one another through difficult days. They show that although amyloidosis is rare, none of us has to face it alone.

As a forum moderator, I look forward to welcoming people from every corner of the world. My hope is that someone who has just received a diagnosis will find a community ready to say, “You’re not alone.”

If our journey has taught me anything, it’s that while medicine treats disease, human connection helps heal the heart. Rare disease may bring uncertainty, but together we can replace isolation with belonging, fear with understanding, and silence with conversations that remind every patient and caregiver that they matter.

I hope to meet you in the forums.

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 familial amyloid polyneuropathy.