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

[Xipe Totec]

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

[canetoad]

1. That's a BFD

Wikipedia left me not much the wiser but there IS an episode of 'House' about this. Stay well.

[walkingman]

2. Wishing good luck with your health going forward.

Impressed that you were able to have such a rare disease diagnosed. You much have some very good healthcare available in your area. Hope you are easily manageable symptoms going forward.

[Xipe Totec]

4. You raise a good point

It took a keen osteo oncologist to intuit the possibility, and it took a major fight with the insurance company to approve the extremely expensive molecular analysis to obtain a definitive diagnosis (after the fact). My doctor took a big risk pushing for the test and ignoring the possibility that the insurance would reject the test and he would have to eat the cost. In retrospect, that guy had some balls. He has since moved on and I'm now in the hands of a new oncologist; a beautiful young African lady, equally capable and competent. I'm definitely one of the lucky ones.

[hlthe2b]

3. I've only heard it mentioned at a continuing education autoimmune disease seminar in recent years...

Not "technically" blood cancer, as I recall, but more along the lines of an autoimmune dysfunction that presents in a lot of different (confusing) ways and may have a genetic predisposition.

Good, that now you know what you are dealing with and have some good input on care.

[LoisB]

5. I'm glad you are in good hands medically.

[Karadeniz]

6. Im so happy that you got a gutsy doctor, a diminishing breed !!!

[CaliforniaPeggy]

7. Oh my dear Xipe!

I am so grateful that your disease is not fatal. That you can live with it, given good medicine.

You are one of the good guys and I treasure you. May your years be ongoing and joyful!

[electric_blue68]

8. Woah, super rare! May this condition be kept in check w a good doc, and good meds through a hopefully long life.