Doing Life Together When Diagnosed With Amyloidosis

In my role as a leader of the New Zealand Amyloidosis Patients Association, I’ve had the privilege of forging relationships with many wonderful human beings. The people I’ve met while running this charity, established in 2019, have enriched my life and pushed me further than I could’ve ever imagined.

The sufferers of amyloidosis and their families flame the fire of purpose for the association and help us aspire to be better. The healthcare practitioners who support us in our endeavors provide hope and meaning to what we strive to accomplish. Those who work in research for pharmaceutical companies, who reach out to understand the needs of patients, provide encouragement and inspiration. Like-minded organizations that accompany us provide traction and vigor to our intentions.

The author Robert Louis Stevenson once noted that, “So long as we love we serve; so long as we are loved by others, I would almost say that we are indispensable; and no man is useless while he has a friend.”

This journey in life, no matter what situation we are in, is enriched when we don’t do it alone. Particularly in the rare disease space, where opportunities to meet others with the same experience and challenges are few and far between, creating a platform to foster connections between one another is so important.

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In the same sense, a patient association is only as effective as the support it can provide. Just as a bridge is only a bridge when it connects two points, I wouldn’t be effective in my work if I couldn’t provide some balance to this disproportionate world of rare conditions. Hence, it is a great comfort to know that other like-minded entities also want to pursue positive change, and that help is there for the asking.

This conduit for help doesn’t only apply to patient associations. As a caregiver to a spouse with hereditary ATTR amyloidosis, I can confidently say that the demands of this diabolical disease would have been even more arduous if not for the people in our lives. In our struggle, the experience of being cared for and loved by those around us has taught us that we can bring value to others, just as they bring value to us. It’s a progressive cycle.

So, today, if you are reading this column, please recognize that a continuous flow of sowing and reaping exists. There is a season to extend your hand and reach for help. And a time may come when those same hands extend to support others.

You may be a patient going through a tough time. If so, reach out for support. It is there. And when the storm has abated, you can find purpose in helping others in need. When we all pull together, great things can happen.

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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.