Hi! I'm Lilithe. 44 years old. Just diagnosed today with PNH. Was tentatively diagnosed with MDS 8 years ago, but nothing definitive, so I walked away from the bulk of the medical world and tried to heal myself with diet addressing what I thought was the cause. But now I can see the problems I have had most of my life were symptoms and not causative. So good to have a sound diagnosis so that I can stop struggling to deal with it on my own and head in a direction that may help me get my life back. Just had a BMB today, so a wee bit sore, but grateful to not feel so in the dark. Thanks for this forum! Oddly enough, I found it because I have been binge watching "House" for the last few weeks (not much energy for anything else!!) and was curious if they had ever mentioned PNH in an episode - led me here! Kismet...
