A good topic to start - I absoultely agree that PNH or AA is a DOOMHAMMER disease for as long as you have it - you are just really ill for as long as you have it.
I have had PNH for six and a half years (I am 17 currently) and a feel like an absoulute wreck, even with soliris and cyclo etc... I tried to continue being active after I was diagonsed with PNH but soon I had terrible symptoms and heart pains and I was forced to stop. I cannot be like other people because I cannot breathe in the morning without getting a THUMPING pulse in my head... After a blood transfusion I may feel ok for a week but then it starts again.
Tbh better to get cancer than this - at least you will either live well or die...
Forget it - dont bother to be normal because you just cant... everytime I tried to be around people they just picked on me for my jaundice and inability to do things like others.
I have no match so BMT is out of the question - My only hope lies in the PNH sponateously recovering - as it can happen in 10% of cases.
Just pray you get well and you be able to make your own blood again - something others take for granted.
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