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oldkarl
@oldkarl

Posts: 604
Joined: May 25, 2016

Amyloidosis. Diagnosis, treatment, frustration. AL, hATTR, etc.

Posted by @oldkarl, Aug 25, 2017

Perhaps the most difficult disorders are those which offer little hope, such as some forms of Amy. The diagnosis is very difficult, slow, frustrating and non-sensical. Some say even illiterate and ego-driven for those with the symptoms and signs. Many of the individual types, such as Cystatin C and others show up at rates of less than one in a million per year, some less than one in 100 million per year. So far, my diagnosis has taken over 50 years, and I suspect will take another 5, if I live that long. My life expectancy is now about 2 years, we suspect. The best known centers in the USA are Mayo-MN, Boston, Stanford, City of Hope. Story at: https://bit.Ly/1w7j4j8

REPLY

Thank you for sharing this, @oldkarl.

This may sound naive, but with all your incredible research on Amyloidosis I’m hoping you are aware of the clinical trials at Mayo Clinic?
I found 11 ‘open’ studies, with respect to AL amyloidosis, and hereditary transthyretin-mediated amyloidosis (hATTR):
http://www.mayoclinic.org/diseases-conditions/amyloidosis/diagnosis-treatment/clinical-trials/rsc-20338936

And here’s a bit about Mayo Clinic’s “Protein Misfiling Lab” which focuses on light chain amyloidosis:
http://www.mayo.edu/research/labs/protein-misfolding/overview

Please keep talking to us and continue to keep us updated – there is no better teacher than experience. We wish you every success and strength.

Yes, Kanaaz, I am just now coming to the point of being eligible for some of those trials. There is one in particular that I hope to get in on, the 2A4-NEOD001. But oh, yes, I am quite familiar with the Mayo-MI system now. Thanks.

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