The eye surgeon had already diagnosed me as having Floppy Eyelid Syndrome (FES). He tried a somewhat creative and non-invasive approach to try to deal with this: I was to wear swimming goggles while sleeping
Read moreMy Erdheim-Chester Disease – Mucous from the right eye
My ECD started in around September 2019, when I started to notice an excess of mucous production around and from my right eye.
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Erdheim-Chester Disease – Typical presentation
ECD is not a cancer. It’s a cancer imitator. It manifests itself with the over-production of cells, which is what a cancer does, but I am told that it does not spread, which is what a cancer will do.
Read moreErdheim-Chester Disease. Like winning the lottery?
ECD is a very rare disease, and one has a far greater chance of winning the lottery, or Lotto, or whatever. The number of documented cases of ECD in the whole world number in the hundreds.
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