When Pat Jordan, 65, was officially diagnosed with hereditary ATTR (hATTR) amyloidosis in May 2016, her first thought was, "Well, now I know how I'm going to die." Her second response, however, was one of relief, because the diagnosis finally put a name to the various medical problems she had been experiencing over the past 20 years.
There are many forms of amyloidosis, some of which are similar to blood cancers. hATTR amyloidosis is not cancer, but it is a debilitating, life-threatening disorder caused by a gene mutation that affects transthyretin (TTR), a protein made primarily in the liver that helps carry substances like thyroid hormone and vitamin A throughout the body. hATTR amyloidosis can affect the peripheral nervous system, the autonomic nervous system and the heart, and because there is currently no cure, it's considered a terminal disease.