Amyloidosis: The Voice of the Patient

Hear Amyloidosis patients speak about their experience with the disease, treatments, clinical trials and wishes.

[@bobchild9051]

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.

[@Dorvita]

hope youre doing well Bob, sending love and helaing hugs from Scotland xoxox

[@bobchild9051]

@@Dorvita thanks for the encouraging words, doing well, numbers been in the normal range for over 3 years. God Bless

[@KMx108]

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.

[@caiobh500]

Minha mãe está no estágio 2 e faz uso de Tafamidis. Porém tenho reparado que seus sintomas avançam cada vez mais. Não sabemos o que fazer mais.