Erdheim-Chester Disease. Like winning the lottery?

Well, it’s not quite that good.

But one’s chances of getting it are slim. Very slim. 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.

Yep: hundreds. It’s that rare.

And it appears that it’s something that I have. That’s where the diagnosis seems to be pointing.

I’m still somewhat incredulous of the diagnosis, but one does listen to what the experts say, and we look to them for guidance.

I will leave it to you to Google ECD for yourself; it’s not for me to tell you about the disease itself, but it is for me to tell you about my journey through this maze, and my experiences in dealing with it, how it’s affecting me, and the various treatments that I am being given as I travel down this path.

Hopefully this series of posts may help someone else who may also be given a similar diagnosis, although given the disease’s rarity, that’s probably a pretty remote option too.