This story was written by a new community member, Tove J. She responded to one of our story requests saying she is open about surviving a rare incurable disease “because other patients have shared their stories and they gave me hope.”
Please thank her for her honesty and willingness to pay it forward in the comments below.
“When I was dying of heart failure I found positive stories from other people with the rare disease that I have and their stories helped me to survive the pain and uncertainty, the sleepless nights, and the lack of knowledge that I encountered from medical personnel.
I am an American immigrant living in New Zealand. When I was diagnosed with AL Amyloidosis I was living in a university town where I did not know anyone. My husband was working overseas and away for a month at a time.
I felt alone and lost as I was getting sicker and sicker.
When I was finally diagnosed with this rare disease (that I had never heard of!) my only resource for information and support was online. I read survivor stories on an amyloidosis support group website and I watched You Tube videos from survivors further along on the treatment and recovery path. I also read and watched presentations from cardiologists that included successful treatment stories about their cardiac amyloidosis patients.
All it took was one survivor story for me to realize that I could also survive this challenge.
The stories gave me so much hope that I shared them with the doctors and nurses who helped me along in my recovery, to be sure that they understood that amyloidosis is not a death sentence.
Stories of survival are a powerful antidote to the despair of a challenging health diagnosis. When I was diagnosed my prognosis was six to twelve months. Three years later I am still alive and working again, riding my bike, open water swimming, teaching meditation, growing vegetables in a garden and sharing my story with other survivors of cancer and challenging health crises.”
– Tove J, AL Amyloidosis, Multiple Myeloma
My wife is a patient of the Amyloidois diagnosed late,initially it affects kidneys and spread out in heart as well. In Kolkata a city i am struggling with her treatment. Present crisis is alarmingly low BP causing task more difficult to continue with VRD treatment by weekly Brotezomib 1g Injection. Patient general health conditions are detoriareting and doctor a hemato oncologist withdrawing stated therapy hints her days are numbered.
We all family members left with no option open to save dearest wife’s life.