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@oldkarl

@alleycatkate Yes, i have the whole business, apparently. We are pretty certain the name of my dyscrasia is Gelsolin, or some other mutation very close, because I have the "amorphous white matter in your (my) cerebral cortex.) My kidneys have not functioned properly for several years. My liver, which makes the stuff, is in stage 4 fibrosis. and on and on. Pancreas thyroid, prostate, lungs, blood vessels, eyes, skin. The fibrils have invaded almost every tissue from my brain to my toes including my lungs and heart walls and vessels. But fortunately, they are spread all over the place, and there is a set number of them, so that slows the process down. But by the time one is 80, it moves faster because it has been doubling and doubling along the way. Yes, it has been very difficult to track down because the docs don't want to fail, and there is very little they can do. But some new meds are on the horizon so there is hope. https://bit.Ly/1w4j7j8

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Replies to "@alleycatkate Yes, i have the whole business, apparently. We are pretty certain the name of my..."

@oldkarl ... Oh God, I am so sorry to hear your news, Karl. It is sobering. I will pray for you and hope that soon there will be meds that can help you. The link you posted on new meds does not open, so I can't see what is in the works. Are there any upcoming drug trials that you can get involved with? I hope you are not in pain. Kate

@oldkarl so sorry to hear that, we will all keep our fingers crossed for a cure very soon.