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Old Tue Dec 5, 2017, 06:10 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Sarah. It is true that many dr's have little or no experience w/ PNH. I would advise, (and so would anyone else familiar w/ PNH) to make sure that you meet w/ a PNH expert as soon as possible. I was never misdiagnosed or diagnosed in an untimely manner.... I simply ignored my symptoms until they became debilitating. They were actually pretty severe for a long time. This site is an excellent resource, and everyone here who I have communicated w/ has been helpful. The NORD website and the PNH meetings are a great resource to meet other people w/ this very rare disease.

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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