Twelve of the most notable experts in the fight against this disease share, in their own unedited words, their views on the state of the disease. They voice what patients and the medical community need to do to push forward, and what lies ahead in the pipeline of potential treatment.
This unparalleled collection of messages from leading experts is a priceless read to understand the disease both today, and tomorrow.
We thank them for their words, and the passion and care they bring to their patients, in the fight against amyloidosis.
Thank you for taking the time to watch and read their stories.
Mackenzie
P.S. You can view the video, or for those preferring a larger font for easier reading, we have provided a transcript for download as well.
DOCTORS of Amyloidosis transcript (download)
Karl Evans says
March 10, 2019 at 12:34 pmStill truth is that the most difficult portion of any form of Amyloidosis of any form is in finding a doctor who will willingly make the diagnosis and begin treatment. I have been searching for D&T for about 70years without success. And I have been part of the NIH Undiagnosed Diseases Network program for 6 months, and I am no farther along than when I started, except that I have narrowed my guesswork down to a few disorders. Still, my PCP continues to resist talking with any 1-AAA clinic to work out my diagnosis. )(^*&&^%
Kevin says
March 10, 2019 at 2:24 pmMr. Evans,
In my opinion; We (patients) must be persistent, diligent in finding ANSWERS!
I basically wasted 1-1/2 year at a cancer center that wanted to “learn” from my rare disease! Meanwhile, the cancer was progressing!
Ask questions, research, & even involve Family to find treatment, don’t wait!
God has blessed us with healing medicine!
Karl Evans says
March 17, 2019 at 1:02 pmKevin, my family is so afraid that they might have my diseases that they will not admit I have any, just like my local doctors. Even Mayo-AZ said my case was too complex for them to deal with. I know I could just leave, but I apparently have only a few months left, so I will probably just stick it out. With everything I have, it really doesn’t make much difference. Several cancers, three fatal AIs that I know of, RA, brain deposits, Guillaine-Barre blindness, etc. And a UDN site unwilling to diag. Phooey. The ARCI.org (amyloidosis research consortium inc.org) app is a good one for prognosis, but needs updated to consider multiple diseases.
Karl Evans says
March 12, 2019 at 9:45 pmKevin: Thanks for your response. I have spent most of today just reviewing the most basic diagnostic procedures for AL. The most interesting thought into my mind was not new at all to me, or to any truly trained and experienced physicians in AL diagnosis and treatment. That is, that there are a few very concrete elements which give very strong clues that AL must be considered, and much higher grade elements must be started PRONTO! The two mentioned by Jose Nativi-Nicolau, M.D., of the Huntsman Center of the University of Utah, are Carpal Tunnel (bilateral in me 30 years ago) and back surgery (2x plus ankylosing spondilitis) 20 years ago. In addition, I have around 200 additional elements, including about 30 “obligate positive” elements. So what’s the holdup with NIH, Mayo and Stanford?