What is Amyloidosis? In my non medical terms, everybody’s body makes protein, and when you have the HTTR gene the body makes the protein but it doesn’t fold correctly and it makes an Amyloid which is a long sticky sheeth. The protein goes into organs and helps them function, when Amyloid gets into the organ because its sticky it makes the organ hard and eventually it will stop working. Is there a cure? Right now there is not cure, Amyloidosis is debilitating progressive fatal disease.There are new treatments which can silence the gene and take it from a water facet running to a trickle.Thought I would share because I have had a few people ask. My dad was diagnosed in 2009 by the time they found it and he died in 2010. He went from walking, to bed bound, hallucinating, and unable to do anything for himself, he had just turned 60. I would be the on the younger side for the gene to become active. Currently it seems to be running active in our family, with many relatives having it, After talking to the Dr, he said they dont know why some families its more active then others. It’s considered rare, but not as rare as you may think. Its hard to find, and many dr’s dont treat it and dont know how or what to look for. My two boys are adopted so there is no risk that this would of been given to them, one bright side.

Leave a Reply

Your email address will not be published. Required fields are marked *