In March of 2015 I was diagnosed with a terminal disease known as Amyloidosis. There are three major types of amyloidosis, AL, AA, and ATTR. My specific diagnosis was ATTR with the genetic mutation of SER97ty. Survival rate for ATTR from the onset of symptoms varies between 3 and 15 years. From June 2015 to December of 2021, I have been on an experimental drug trial by Alnylam known as Onpattro (Patisiran). In 2022 my trial rolled over to the approved commercial treatment of Onpattro. As of February 2023 I have now moved to Alnylam’s quarterly dose of Amvuttra.
Below are some helpful links to YouTube videos and articles to help better understand this disease:
Start Here!
Other helpful links:
Free Genetic Testing from Invitae/Alnylam Click Here
Supplements/dosage study that you may want to try: Green Tea Extract
Amyloidosis: What You Need to Know – Dr. Morie Gertz
Familial (ATTR) Amyloidosis – Dr. Morie Gertz
Cardiac Amyloidosis – Dr. Martha Grogan
Cardiac Amyloidosis – Tests and Treatment – Dr. Martha Grogan
Untangling Amyloidosis – Boston University
Amyloidosis Foundation
Presentation on Amyloidosis and Patisiran:
03-hATTR_Patisiran_RDDay-2016
Amy – The Blog
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