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So far that is what the hematologist is saying, I would have to stay on Soliris for the rest of my life. Currently diagnosed I am 26 years old, so hoping it is a long "normal" life. I had one hematologist say that I have PNH 1 and they are grouped by PNH 1, 2 or 3 stage?
Then being on Soliris would only stop the break down of the attack on my red cells, but Soliris wouldn't help block the attack on my White blood and platelets correct?
Once again I am thankful for this board and to have you answer my question. It is scary and to know that there are others with this rare disease makes it feel a little less lonely.
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