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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Can We Get Updated Resource Material?

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

Some of the material is from 2021. A lot has advanced since then. Would also like to see new numbers on the overall survival OS rates. We need to know with advanced treatments comes better prognosis.

September 16, 2024
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A MyAmyloidosisTeam Member

There’s an increasing amount of literature to search through but I always start with Mayo Clinic.

October 2, 2024
A MyAmyloidosisTeam Member

The AI employed here is producing muddled content — mixing AL and TTR in its answers. Not quite hallucinating, but unreliable.

September 18, 2024
A MyAmyloidosisTeam Member

And that was modified in 2022 🙄 Not everything is solved by AI

September 16, 2024 (edited)
A MyAmyloidosisTeam Member

Once you obtain a basic understanding of your disease, your best bet is academic journals. If you struggle with statistics and such, there are explainers/primers out there that make it understandable.

October 3, 2024
A MyAmyloidosisTeam Member

AI is very cunning ... be wary 👍

September 16, 2024

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Stage One Attr-wt Life Expectsncy

A MyAmyloidosisTeam Member asked a question 💭
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Will The Site Be Putting Up Any New Material In The Resources Section? Some Of The Material Is From 2021… Maybe A Little Outdated 🤷🏻‍♀️

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

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