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Hi Pearl. I am a frequent visitor here. I have met some PNH/ AA patients at a few different events in the last few years and I know that some of them do the FB/ social media thing which I do not. I am guessing that some people w/ MDS also communicate through social media. As you probably know, those of us w/ PNH (or in my case transplanted) are few and far between, so PNH related posts are also fairly infrequent here. Neil is right about fewer posts during the holiday seasons because so many people are busy w/ other things.
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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