I have Erdheim-Chester disease. If you've never heard of it, I'm not surprised [View all]

Out of a world population of over 8 billion people, there have been 1,500 documented cases of this disease.

The good news is that this is a disease, though chronic and incurable, is generally not fatal. Which is why it took so long for it to be detected. Mostly through autopsy.

As my oncologist quipped: "This is one of those diseases you die with, not die of".

It's going to be an interesting (hopefully very long) ride.

With compensating medication the symptoms are mostly unnoticeable.

Just an interesting factoid.

It narrows your chances of identifying me IRL from 8,000,000,000: 1 to 1:1,500