Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member Latest Breaking News Editorials & Other Articles General Discussion The DU Lounge All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search

General Discussion

hlthe2b

(110,745 posts)

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

Reply to Xipe Totec (Original post)

Wed Apr 2, 2025, 05:18 PM

Apr 2025

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.

Edit history

Please sign in to view edit histories.

Recommendations

0 members have recommended this reply (displayed in chronological order):

8 replies

= new reply since forum marked as read

Highlight:

I have Erdheim-Chester disease. If you've never heard of it, I'm not surprised [View all] Xipe Totec Apr 2025 OP

That's a BFD canetoad Apr 2025 #1

Wishing good luck with your health going forward. walkingman Apr 2025 #2

You raise a good point Xipe Totec Apr 2025 #4

I've only heard it mentioned at a continuing education autoimmune disease seminar in recent years... hlthe2b Apr 2025 #3

I'm glad you are in good hands medically. LoisB Apr 2025 #5

Im so happy that you got a gutsy doctor, a diminishing breed !!! Karadeniz Apr 2025 #6

Oh my dear Xipe! CaliforniaPeggy Apr 2025 #7

Woah, super rare! May this condition be kept in check w a good doc, and good meds through a hopefully long life. electric_blue68 Apr 2025 #8