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Old Tue Sep 13, 2016, 03:29 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Jen. Some of the dr's that practice at the clinic that I go to helped to develop the protocol used for me, so maybe that's why they were all so confident in my treatment. How crazy is it to have something like PNH? Some guy from Nebraska who I met at a conference said that only 1 other person in that whole state is known to have PNH! I'm hoping that the doctor who is speaking at the Seattle conference will have some stories of other transplant ppl, or better yet some transplanted patient(s) since the Fred Hutchinson Cancer Research Center is there.

Mario
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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