How fast can primary amyloidosis spread? And what is the average survival rate for this disease?

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As recently as 1994, a diagnosis of amyloidosis was a death sentence; average life remaining after diagnosis, 13 months. Now there is hope--not certainty of a long life, but 25% to 60%. depending onj individual circumstances. I was diagnosed 2/99, treated 6/99, recovered completely, relapsed 11/03, and am still kicking.

Your best bet for one-stop shopping for amyloidosis information on the net is http://www.amyloidosis.org. There is also a Yahoo group named amyloidosis and also a mailing list named amyloid hosted by the Association of Cancer Onliine Resources. The amyloid list has aroiund 500 subscribers, amyloidosis Yahoo group has maybe half that many. Face-to-face support for patients and caregivers is also availabe in most large metropoolitan areas two or three times a year. See http://www.amyloidosissupportgroups.com for details.

To join the amyloid list, see http://www.acor.org/amyloid.html . I hang out on thte amyloid list. Nothing against the Yahoo group, I just found the ACOR first, I know the regulars there. I'm one of them, actually. Hope this helps.

TRY THIS WEB PAGE IT MAY HELP, i DON'T LIKE FEELING LIKE i'VE GIVEN SOMEONE BAFD NEWS.

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How fast can primary amyloidosis spread? And what is the average survival rate for this disease?

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