going on 2 years diagnosed, seen at least 6 doctors, had symptoms prob 5 years before diagnosis, 2 seperate chemo regimens, almost killed me until recommended to stanford amyloidosis clinic. put me on daratumamab and free light chain numbers dropped to normal within 6 months. now in sort of remission, neuropathy still with me, heart damaged, have hope.
Not only is this research critical, but so is proper testing. My doctors didn't know what was wrong with me and wanted whole exome sequencing done. My insurance denied it saying that, at age 46, I was too old to benefit from anything this test would reveal. I had to pay out of pocket to find out I have a pathogenic TTR gene mutation. I'm glad to know there are treatment options for me. I feel like my insurance company needs to be punished for obstructing my care.
