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Old Tue May 27, 2014, 05:59 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Quote:
Originally Posted by Neil Cuadra View Post
Lilithe,

Good luck getting a handle on your illness and what you can do about it. I hope you'll be able to consult a PNH specialist.

You must have run across the PNH mentioned on "House" TV show thread. There were a surprising number of "House" episodes that touched on bone marrow failure. Maybe my family is just attuned to notice them because it's a medical area we're familiar with, but AA, MDS, and PNH seemed to have just the right combination of mysterious symptoms, terminology, and diagnostic challenges to suit the writers of that show.
There was one with a bicycle rider who turned out to have PRCA. He also had MG. At the end of the show, they removed his thymus gland. Problem solved. In the real world less than one person in the world gets this combination in any year. I love(d) House.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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