Hi NasC0. Clone size is part of the progression of PNH, but I'm speaking more specifically in terms of quality of life. With that, Soliris does not work for all patients w/ PNH. In respect to myself, my symptoms were so severe that a transplant consultation was done soon after diagnosis. And of course, blood clots are a risk as you already know. I would recommend that your girlfriend address these issues with her doctor or another specialist.
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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