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Important note from Robert Jordan |
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Page 1 of 2 I have been diagnosed with amyloidosis. That is a rare blood disease which affects only 8 people out of a million each year, and those 8 per million are divided among 22 distinct forms of amyloidosis. They are distinct enough that while some ...
I have been diagnosed with amyloidosis. That is a rare blood disease which affects only 8 people out of a million each year, and those 8 per million are divided among 22 distinct forms of amyloidosis. They are distinct enough that while some have no treatment at all, for the others, the treatment that works on one will have no effect whatsoever on any of the rest. An amyloid is a misshapen or misfolded protein that can be produced by various parts of the body and which may deposit in other parts of the body (nerves or organs) with varying effects. (As a small oddity, amyloids are associated with a wide list of diseases ranging from carpal tunnel syndrome to Alzheimer's. There's no current evidence of cause and effect, and none of these is considered any form of amyloidosis, but the amyloids are always there. So it is entirely possible that research on amyloids may one day lead to cures for Alzheimer's and the Lord knows what else. I've offered to be a literary poster boy for the Mayo Amyloidosis Program, and the May PR Department, at least, seems very interested. Plus, I've discovered a number of fans in various positions at the clinic, so maybe they'll help out.)
Now in my case, what I have is primary amyloidosis with cardiomyapathy. That means that some (only about 5% at present) of my bone marrow is producing amyloids which are depositing in the wall of my heart, causing it to thicken and stiffen. Untreated, it would eventually make my heart unable to function any longer and I would have a median life expectancy of one year from diagnosis. Fortunately, I am set up for treatment, which expands my median life expectancy to four years. This does NOT mean I have four years to live. For those who've forgotten their freshman or pre-freshman (high school or junior high) math, a median means half the numbers fall above that value and half fall below. It is NOT an average.
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