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Travels With Amy

Now I’m fighting the biggest battle of my life. I’ve been diagnosed with ATTRwt – transthyretin amyloidosis, wild type (that’s a much better name than the previous “senile amyloidosis). This is sometimes hereditary, but mine is of unknown cause, other than being old (71 as I write this in 2019).

I hope to do some writing about this adventure. While this is considered a rare disease, that’s primarily because nobody knew to look for it.

Now that first treatment has been approved by the FDA (May 2019), it’s a different ballgame. This drug, generically known as Tafamidis, but now sold by Pfizer as Vindaquel, attempts to stop the progression of the disease. New drugs under development will try to reverse it. In either case, probably too late for me, as my heart and other organs are already damaged.


Perhaps I can help others understand what amyloidosis is, why to ask your doctor if it may relate to you, and especially to help the newly diagnosed and their loved ones.

First post is about carpal tunnel and ATTR.