I was at a routine visit in January 2024 and my cardiologist said I needed a PYP scan based only on bilateral carpal tunnel syndrome . Three days later scan was done and confirmed ATTR CM . Took a month to get genetic testing back and I have wild type. Cardiologist got me approved for Atturby (acoramidis) in February and have taken it ever since . It’s an oral pill that stabilizes the misfolded proteins the liver makes so they can be flushed out of my body . I was enrolled in the Crispr Cas 9 study in March 2025 and received an infusion ( double blind study ) in May where the infusion (this is a one time infusion)cuts the genes creating the misfolded proteins . The trials were successful in Europe and currently ongoing in the states . I will find out May 19th if I got the drug or the placebo . If I received the placebo I will receive the infusion of the drug then . Houston Methodist has an Amyloidosis conference annually and this years is May 8th and is very informative with Dr.s from all over the country. Good luck and if there’s anything I can do or if you have questions, please reach out .

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