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Old Sat Mar 8, 2014, 07:14 PM
ussoccer004 ussoccer004 is offline
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Join Date: Feb 2014
Location: Orlando, FL
Posts: 21
PNH Specialist Florida

Does anyone know if there is a PNH specialist in Florida at all? I know we have M.D. Anderson Cancer Center that is now the University of Central Florida Cancer Center.

I began my Soliris last week and starting to feel amazing, less headaches, shortness of breath getting better. All symptoms of PNH are starting to slowly subside. I have a large clone size and had a blood clot in my head recently which scared my hematologist in starting Soliris ASAP. To my amazement she seems to think that one day I will be able to come off soliris and this is what scares me because I thought this was a life long disease lol?
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